In the News
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Seasons Greetings from The Gauchers Association
21 December 2023
We would like to wish you Seasons Greetings and a very Happy New Year. Thank you for all of your support in 2023. It was certainly a busy year...
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The London Marathon 2024 - 21st April 2024 - Run for Gaucher
25 October 2023
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The Gauchers Association Family Fun Day 2023
05 October 2023
On Sunday 1st October an intrepid group of Gaucher familes met at Warwick Castle to enjoy the GA Family Fun Day. Originally built in 1068 by Will...
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Skydive in memory of Emma Hall
03 October 2023
On Saturday 30th September, a brave Lisa Robson took to the skies to jump out of a plane in memory of her sister Emma Hall who would have been 30 year...
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The Belfast, London and Paris Marathons 2023
02 October 2023
In April of this year we were lucky enough to have runners take part in the London, Paris and Belfast Marathons. We were very grateful to all these&nb...
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Welcome Su!
16 January 2023
We are thrilled to introduce you to our new Operations and Communications Co-ordinator, Su Simons. Su has worked in the charity sector for he...
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Would you like to run for the Gauchers Association in the London Marathon in 2023?
09 December 2022
A fantastic opportunity has arisen to run the London Marathon on Sunday 23 April 2023. We have a few spaces left for runners who want to support the G...
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Goodbye Sarah!
06 August 2022
Many of you know and love Sarah Allard, our Operations Manager,...
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Join our team
22 April 2022
We are recruiting for a Treasurer to join our dedicated team of Trustees. Would you like to give something back to the Gaucher community and hav...
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Season's Greetings for 2021
17 December 2021
The office will be closed from 4pm on Friday 17th December 2021 and will reopen on Tuesday 4th January 2022 at 9am The Gauchers Asso...
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December 2021 News
16 December 2021
Our final news bulletin for 2021 is now ready to download and read here. If you have a story you would like to share in 2022 please get in touch wi...
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November 2021 News
17 November 2021
Our latest news bulletin is now available to read online here If you have a story to share please get in touch with Sarah in the office on sarah@ga...
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GD2 clinical trial site opens in the UK
08 October 2021
Prevail Therapeutics, a wholly owned subsidiary of Eli Lilly and Company, is currently conducting a Phase 1/2 clinical trial, called PROVIDE, assessin...
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FAQs on Covid and Homecare
26 August 2021
The National Clinical Homecare Services have updated and published their latest FAQs on Covid and Homecare you may find useful. If you woul...
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Type 2 Gaucher disease information booklet
16 July 2021
We are delighted to announce our latest information booklet on type 2 Gaucher disease has been published and is available either as a hard copy f...
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Season's Greetings 2020
16 December 2020
The office will be closed from 4pm on Friday 18th December 2020 and will reopen on Monday 4th January 2021 at 9am The Gauchers Association would li...
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September News Bulletin
25 September 2020
September News Bulletin - Click here Here is all the latest news by reading and sharing our September news bulletin. If you have a sto...
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July 2020 News Bulletin
24 July 2020
July News Bulletin - Click here Here is all the latest news by reading and sharing our July news bulletin. If you have a story to shar...
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UK LSD Collaborative Survey 2020
10 July 2020
If you or your family member(s) receive care and services linked to an ultra-rare disease, such as Gaucher disease, we need your help. To support c...
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Can you help to support trainees in inherited metabolic disease and lysosomal storage disorders?
23 June 2020
COVID-19 has brought challenges and change for all of us, affecting every aspect of our lives, including the way we access and interact with our healt...
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May 2020 News Bulletin
22 May 2020
May News Bulletin - Click here Here is all the latest news by reading and sharing our March news bulletin. If you have a story to...
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UK Adult LSD latest update
24 April 2020
The UK adult LSD centres have all been working incredibly hard supporting and answering questions from patients and have produced a very useful advice...
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NHS England and high risk letters
08 April 2020
We are aware that many of you may have received a text message or a letter from NHS England stating that due to being a Gaucher patient you are at hig...
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NHS England and Shielding against COVID-19
25 March 2020
Many of you may have received a text message or a letter from NHS England about shielding. Shielding is designed to protect those considered to be mos...
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Recording of COVID-19 Webinar 23rd March 2020
24 March 2020
For those who could not attend yesterday's webinar (on how those affected by inherited metabolic diseases may be impacted by the recent coronaviru...
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March 2020 News Bulletin
19 March 2020
March News Bulletin - Click here Here is all the latest news by reading and sharing our March news bulletin. If you have a story to sh...
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Coronavirus - are you worried how it may affect you?
13 March 2020
COVID-19 Webinar, Monday 23rd March, 11am-12pm your questions answered This webinar has been organised by patient organisations working in the fiel...
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Latest update on Education Days 2020
12 March 2020
Amid concerns about the spread of Coronavirus (Covid-19), the Association has taken the difficult decision to postpone the upcoming Type 1 Education D...
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February 2020 News bulletin
28 February 2020
February News Bulletin - Click here Please read all the latest news and fundraising updates by reading and sharing our February news bulletin....
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January 2020 News Bulletin
20 January 2020
January News Bulletin - Click here Please read all the latest news and fundraising updates by reading and sharing our January news bulle...
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Season's Greetings 2019
20 December 2019
The office will be closed from 4pm on Friday 20th December and will reopen on Mpnday 6th January 2020 at 9am The Gauchers Associati...
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December News Bulletin
18 December 2019
Click here to read all the latest news and updates from the Gauchers Association Our newsletter will be automatically emailed to you if you su...
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Innovative Medicines Fund
26 November 2019
Boris Johnson has announced that, if re-elected, the Conservatives would launch a £500m fund to give patients “quicker access to the most...
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An Insight from Gaucher patients aged 45 years and over in the UK
06 November 2019
Thank you to everyone who participated in our recent research project into Gaucher patients experiences aged 45 and over in the UK; the results of whi...
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October 2019 News Bulletin
02 October 2019
Click here to read all the latest news and updates from the Gauchers Association Our newsletter will be automatically emailed to you if you subscri...
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Published paper on wearable technology
06 September 2019
We are delighted to share the published paper on experiences measuring disease activity and patient experience remotely using wearable devices an...
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Patient and Family Support Worker
05 September 2019
We are delighted to introduce our new Patient and Family Support Worker, Claire Bickley who started working for the Association this week. Claire says...
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July 2019 News Bulletin
25 July 2019
Click here to read all the latest news and updates from the Gauchers Association Our newsletter will be automatically emailed to you if you su...
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Rapsodi Public Engagement Meeting
10 July 2019
For those of you who were unable to attend the recent Rapsodi Public Engagement meeting hosted in London we are very pleased to be able to share their...
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An update on the future of the Gauchers Association from Jane Jones, CEO and Dan Brown, Chairman
17 June 2019
Dear Friends A message from our Chief Executive, Jane Jones: It is now a year since my appointment as Chief Executive of the Gauchers Associatio...
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May News Bulletin
28 May 2019
Click here to read all the latest news and updates from the Gauchers Association Our newsletter will be automatically emailed to you if you subscri...
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April News Bulletin
24 April 2019
Click here to read all the latest news from the Gauchers Association. Our newsletter will be automatically emailed to you if you subscribe to our n...
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March News Bulletin
28 March 2019
Click here to read all the latest news and updates from the Gauchers Association. Our newsletter will automatically be emailed to you if you s...
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Maddie Collin speaks out over Brexit concerns
18 March 2019
The Gauchers Association Trustee and Gaucher patient Maddie Collins has spoken out about her Brexit concerns for the UK Rare Disease Patient Community...
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Update on Gene Therapy
27 February 2019
The Gauchers Association is pleased to provide an update on the progress of a potential Gene Therapy targeting treatment for all types of Gaucher dise...
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February News Bulletin
22 February 2019
Click here to read all the latest news and updates from the Gauchers Association. Our newsletter will automatically be emailed to you if you subscr...
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Season's Greetings 2018
21 December 2018
The office will be closed from 4pm on Friday 21st December and will reopen on Tuesday 2nd January 2019 at 9am The Gauchers Association would...
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December News Bulletin
19 December 2018
December News Bulletin - Click here Please read all the latest news and fundraising updates by reading and sharing our December News bulletin....
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Jeremy Manuel Honorary President of International Gaucher Alliance
08 November 2018
The Gauchers Association is delighted to announce that during the biennial meeting of the International Gaucher Alliance (IGA) - formally the Europ...
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November News Bulletin
02 November 2018
November News Bulletin - Click here! Please read all the latest news and fundraising updates by reading and sharing our November News bulletin....
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International Gaucher Day 2018
25 September 2018
International Gaucher Day was launched by the EGA in 2014 and is celebrated annually on 1st October to raise awareness of Gaucher disease. The...
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The Vitality Big Half Marathon 2019
02 August 2018
We have successfully secured 5 charity places for the Vitality Big Half Marathon on Sunday 10th March 2019. This half marathon was first held...
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Family Fun Weekend 2018
17 July 2018
If you have a child with Gaucher disease aged 18 or under and live in the UK, we would love you to come to our family fun weekend being held on 6th...
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The Gauchers Association appoints new Chief Executive
17 July 2018
Following the announcement that Tanya Collin-Histed has stepped down from her role with the Gauchers Association to take up a full time role with t...
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Tanya Collin-Histed to move to the EGA full time
26 April 2018
During her time as Chief Executive of the Gauchers Association the Charity has grown in size, stature and profile and its impact on the Gaucher Com...
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London Marathon 2018 update
23 April 2018
A massive thank you and congratulations to our amazing runners, Chris, Paul, Matt & Lucy who all completed the London Marathon yesterday, what...
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How do you want to hear from us?
06 April 2018
Due to changes in data protection legislation, soon The Gauchers Association won’t be able to contact you about any of our services or a...
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Bank Holiday office hours
29 March 2018
The Gauchers Association office will be closed from Thursday 29th March at 4.30pm and will re-open on Tuesday 3rd April at 9.00am for the bank holi...
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Gift Aid it!
19 March 2018
People giving to charity are being encouraged by the government to declare Gift Aid on their donations, and boost the money that reaches their char...
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London to Cambridge Bike Ride 2018
23 February 2018
We are very pleased to announce online registration is now open for our London to Cambridge charity bike ride on Sunday 16th September. Numbe...
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February 2018 News Bulletin
02 February 2018
Our February news bulletin should have now landed in your inbox and is also available to download from our website. if you have not recei...
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Season's Greetings 2017
15 December 2017
The Gauchers Association would like to wish all our members, families, friends and collaborative partners Seasonal Greetings and thank you to every...
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Access to Medicines in NHS Wales
11 December 2017
All Wales Therapeutics & Toxicology Centre (AWTTC) have produced a patient information video to help people understand how medicines can b...
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Scottish Medicines Agency (SMC) says 'YES'
11 December 2017
Today, the SMC announced that Cerdelga is recommended within its marketing authorisation for treating type I Gaucher disease, that is, for long-ter...
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Trustees Week 17th November
17 November 2017
Thank you to our trustees On behalf of the whole Gaucher community I should like to end Trustees Week by saying a HUGE thank you to all our won...
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Trustees Week 16th November
16 November 2017
I was diagnosed with Gaucher Disease when I was 26. Like most newly diagnosed patients my initial emotions were fear and apprehension and I focused...
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Trustees Week 15th November
15 November 2017
The Gauchers Association is the only registered UK charity providing support to individuals and families affected by Gaucher Disease, acting a...
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Trustees Week 14th November
14 November 2017
The Gauchers Association is the only UK registered charity providing support to individuals and families affected by Gaucher disease, acting as the...
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Trustees Week 14th November
14 November 2017
Trustees are the people in charge of a charity. They help to make the UK the sixth most giving country in the world. They play a vital role, volunt...
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Trustees Week 13th November
13 November 2017
Welcome to Trustees Week. There are approximately 196,000 charities in the whole of the UK and just over 1 million trustees. Who are our trustees?...
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Trustees Week
10 November 2017
Next week is the start of Trustees week (13-17 November). This is an annual event to showcase the great work that trustees do and highlight the opp...
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October update
26 October 2017
Dr Patrick Deegan and Clinical Nurse Specialist Elizabeth Morris from Addbenbrooke's Hospital, Cambridge have very kindly answered some questio...
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Jeans for Genes Day
08 August 2017
Jeans for Genes is the annual fundraising campaign for Genetic Disorders UK, the national charity that supports individuals an families affected by...
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Jeans for Genes Day
08 August 2017
Jeans for Genes is the annual fundraising campaign for Genetic Disorders UK, the national charity that supports individuals and families affected b...
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Drugs Industry to sue over price cap on NHS medicines
11 July 2017
The pharmaceutical industry is planning to sue the drugs watchdog over the price cap on medicines. The Association of the British Ph...
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Final Place for The Great North Run
21 June 2017
FINAL PLACE....... We would love to fill the final place that we have available for The Great North Run. This iconic event is taking place on 10th...
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NICE says ‘YES’ to NHS paying for Cerdelga for adult patients with Type 1 Gaucher Disease
31 May 2017
Today, the National Institute for Health and Care Excellence (NICE) announced that Cerdelga is recommended within its marketing authorisation for t...
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PRESS RELEASE - NICE and NHS England
28 March 2017
In late October 2016 NHS England and NICE launched a 12-week consultation on changes to the arrangements for evaluating and funding drugs and other...
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Clinical Trial for Gaucher Disease Type 3
21 February 2017
Sanofi Genzyme is investigating an orally administered substrate reduction therapy in Gaucher disease type 3 as part of the 2-part LEAP clinical re...
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Gauchers Association charity cycle ride 2017
17 February 2017
Back by popular demand with a brand new revised 60 (or 40) mile cicular route. Sunday 21st May 2017 - Online registration NOW OPEN! R...
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Rare Disease Day 2017
10 February 2017
The Rare Disease Day 2017 slogan is 'With research, possibilities are limitless.' On 28th February 2017, the tenth edition of Rare Dise...
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Clinical Trial ALERT!!!
03 January 2017
Genzyme, a Sanofi Company have launched a phase 2 clinical trial in adults (18 years and older) with Type 3 Gaucher disease. This 52-week two-part...
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Season's Greetings 2016
16 December 2016
The Gauchers Association would like to take this opportunity to wish all our friends Season's Greetings and best wishes for the New Year and to...
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Season's Greetings 2016
16 December 2016
The Gauchers Association would like to take this opportunity to wish all our members, families, friends and all our collaborative partners Seasonal...
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Gauchers Association UK Members Survey
14 October 2016
We would like to invite you to complete a short online survey to tell us what you think about the work of the UK Gauchers Association. This pie...
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25th Anniversary Dinner
09 October 2016
Save the Date - 5th November 2016 This year is the 25th Anniverasary of the Gauchers Association and to celebrate this momentous occ...
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Donate your first new £5 note!
29 September 2016
The new £5 note has been launched, this has inspired people to donate the first one they receive to charity. To donate your first £5 to...
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Donate your first new £5 note!
29 September 2016
The new £5 note has been launched, this has inspired people to donate the first one they receive to charity. To donate your first £5 to...
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Gauchers News July 2016
15 July 2016
Please see the Gauchers Summer newsletter is now available to read and download from our website!
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Ride London 2016
17 May 2016
We only have ONE place remaining for Ride London on Sunday 31st July 2016. This fantastic 100 mile route all on closed roads through the capi...
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Birmingham Children's Hospital Family Rare Disease Day
25 January 2016
On Saturday 27th February, Birmingham Children's Hospital are holding a family day for all children and young people with a Rare Disease. This...
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Season's Greetings 2015
18 December 2015
The Gauchers Association would like to take this opportunity to wish all our members Seasonal Greetings and best wishes for the New Year and to tha...
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2015 Christmas cards
13 October 2015
The Gauchers Association 2015 Christmas cards are now in stock! We hope you will support us by purchasing this year's design. Each pack contain...
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Virgin London Marathon 2016
12 October 2015
Did you apply through the ballot for the 2016 London Marathon? If you were unsuccessful or know somebody who would like to take part in this iconic...
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Happy International Gaucher Day
30 September 2015
Happy International Gaucher Day! Don't forget to send us your photos
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Young Person's meeting 2015
06 September 2015
We still have a few places remaining for our young person's activity meeting being held from 18-20th September in the Lake District YMCA Nation...
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Support Newborn Screening Awareness week in the UK on 7th September 2015
28 August 2015
4 years ago Newborn Screening Awareness (NBS) Week in the UK was introduced. This takes place each year in September and this year NBS Awareness We...
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3 Weeks until the London to Cambridge Cycle Ride
12 August 2015
With just three weeks to go until the Gauchers Association London to Cambridge cycle ride you still have time to register online to take part in th...
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London 10K run
23 June 2015
We still have three places remaining for the London 10K run on Sunday 12th July. The closing date for registering for this event is fast appr...
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We have moved!
15 June 2015
The Gauchers Association have moved office, our new address is: 8 Silver Street Dursley Gloucestershire GL11 4ND Our...
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London to Cambridge Cycle Ride 2015
04 June 2015
Don't forget to register early for the Gauchers Associations 6th London to Cambridge cycle ride on Sunday 6th September 2015. Registering...
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Aviva Community Fund Voting Now Open!
05 May 2015
The Gauchers Associations work is about ensuring the patients voice is heard. The Type III Empowerment project empowers young people to use their v...
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7th nGD European Family Conference
17 April 2015
Booking forms are now available for the 7th nGD European Family Conference on 13th - 15th November 2015 in Manchester UK. If you are interested in...
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Eighth Alan Gordon Memorial Award
16 March 2015
The Gauchers Association are pleased to announce the eighth Alan Gordon Memorial Award has been awarded to Dr Ashok Vellodi from Great Ormond...
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Where do you run?
06 March 2015
We have four places remaining for the London 10k run on Sunday 12th July 2015. Contact Sarah on sarah@gaucher.org.uk or 01453 549231 if you are int...
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Breaking News - UK Gauchers Association granted a positive opinion for orphan designation for Gene Therapy for Gaucher Disease
27 February 2015
The UK Gauchers Association is delighted to announce that on 12 February 2015 the Committee for Orphan Medicinal Products (COMP) at the European Me...
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Rare Disease Day 2015
13 February 2015
Rare Disease Day 2015 is on 28th February. This is a day to raise awareness among the general public and decision makers about rare diseases and th...
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Prudential Ride London
05 February 2015
Have you been unsuccessful in this year's ballot for the Prudential Ride London? We have spaces available, why not be part of t...
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2015 Golf Day
30 January 2015
The Gauchers Association are pleased to announce they will once again be hosting their fabulous golf day on Wednesday 20th May 2015 at Dyrham Park...
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European Commission grants marketing approval for Cerdelga (Eliglustat) capsules
26 January 2015
The Gauchers Association are pleased to announce that the European Commission (EC) has granted marketing approval for Cerdelga (Eliglustat) capsule...
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Seasonal Greetings
19 December 2014
The Gauchers Association would like to take this opportunity to wish all our members, families, friends and all our collaborative partners Seasonal...
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Alan Gordon Memorial Award 2015
05 December 2014
The Association is now inviting nominations for the 8th Alan Gordon Memorial Award. If you feel someone, whether a doctor, researcher, profes...
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Great North Run 2015
31 October 2014
The Association is pleased to announce they have secured 5 Golden Bond places for the 2015 Great North Run on Sunday 13th September starting in New...
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Cerdelga update
17 September 2014
Following the Food and Drug Administration (FDA) approval of Cerdelga as an oral treatment for certain adult Gaucher disease type 1 patients in Aug...
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Expression of Hope III
17 September 2014
Genzyme a Sanofi company have recently announced the launch of their “Expression of Hope III” Program to Build Awareness of Lysosomal S...
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British London 10k Run 2015
15 September 2014
Are you looking for your next sporting challenge? The Association have secured six places for the British London 10k run on Sunday 12th July 2015....
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London to Cambridge Bike Ride 2014
22 August 2014
Only 2 weeks to go before the Gauchers Charity Bike Ride on Sunday 7th September 2014 You still have time to register, Click now on the followi...
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FDA Approves Genzyme's Cerdelga (eliglustat) capsules
20 August 2014
Genzyme, a Sanofi company (EURONEXT: SAN and NYSE: SNY), announced today that the U.S. Food and Drug Administration (FDA) has approved Cerdelg...
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London to Cambridge Bike Ride
11 August 2014
You may be aware the Gauchers Associations 5th London to Cambridge Charity bike ride on Sunday 7th September is fast approaching and plans are...
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velaglucerase alfa (VPRIV) - Wales
07 August 2014
The Association is pleased to announce velaglucerase alfa (VPRIV®) has been approved as a recommended treatment for Gaucher Disease for u...
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International Gaucher Day 2014
19 June 2014
We would like to invite you to celebrate the first ever International Gaucher Day (IGD) by organising or hosting a coffee morning at home or at wor...
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Joint proposal to facilitate clinical investigation of new medicines for Gaucher disease in children
15 May 2014
The European Medicines Agency and US Food and Drug Administration release joint proposal to facilitate clinical investigation of new medicines for...
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Dr Derralynn Hughes talks on 'Newer Manifestations of Gaucher Disease
18 March 2014
Dr Derralynn Hughes talks on 'Newer Manifestations of Gaucher Disease The Gauchers Association are delighted to bring you a recordin...
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Research Nurse Position at Cambridge
10 March 2014
A position has arisen in the Department of Medicine at the University of Cambridge for an experienced and highly motivated research nurse to join t...
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Rare Disease Day 2014
07 March 2014
The Gauchers Association was pleased to be invited to take part in the publication entitled Rare Diseases distributed within The Independent newspa...
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WebEx Register NOW!
25 February 2014
Following on from the cancellation of our second WebEx event last October; this has now been rescheduled for Monday 17th March at 7.30pm Durati...
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Statement from Healthcare at Home regarding homecare services
17 January 2014
Over the past few months, Healthcare at Home has experienced a period of significant disruption and backlog of deliveries due to a substantial and...
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Seasons Greetings
20 December 2013
The Gauchers Association would like to take this opportunity of wishing you Seasonal Greetings and very best wishes for 2014. We should also...
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Professor Ed Wraith Memorial Meeting 2014
02 December 2013
Professor Ed Wraith Memorial Meeting 5th April 2014 The Point, Lancashire Cricket Club, Manchester The Ed Wraith Memorial Meeting on Lysoso...
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6th nGD Family Conference
11 November 2013
Following on from our successful 6th nGD family conference this weekend, we would like to send our thanks to everybody who attended on Saturday and...
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Ride London 100 - 2014
01 November 2013
The Gauchers Association is pleased to announce they have secured Golden Bond places for the Prudential Ride London 100 for 2014, 2015 & 2016....
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Second WebEx Seminar Book NOW!
10 October 2013
Following on from our first WebEx Seminar held in May 2013 hosted by Professor Timothy Cox, please contact Sarah on sarah@gaucher.org.uk or 01...
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2014 London Marathon
27 September 2013
Have you missed out on the Ballot for the Virgin London Marathon on 13th April 2014? Would you or maybe you know somebody who would like to t...
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Listen NOW! If you missed first WebEx
06 June 2013
Following on from the success of The Associations first ever WebEx event, very kindly presented by Professor Timothy Cox on the recently announce n...
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ABPI ruling regarding Shire press release
24 May 2013
In June 2012 Shire issued a press release with the results of a head to head trial between VPRIV (Shire Human Genetics) and Cerezyme (Genzyme-Sanof...
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Book your WebEx NOW!
13 May 2013
The Gauchers Association are pleased to announce they are holding their first WebEx on Monday 20th May at 7.30pm, hosted by Professor Timothy Cox.&...
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Empathy Forum
10 May 2013
We have been asked to share the details of a up and coming project involving all young patients and the European Patients Forum (EPF). We sho...
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2012 Alan Gordon Memorial Award
22 March 2013
The Gauchers Association is pleased to announce the winner of the 2012 Alan Gordon Memorial Award to the Lysosomal Storage Disorder Clinical Nurse...
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Rare Disease Day
04 March 2013
The Gauchers Association was pleased to be invited to take part in the publication entitled Rare Diseases distributed within The Independent newspa...
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New Patient and Family Support Worker
26 February 2013
The Gauchers Association is pleased to welcome on board Gill Glover, our new Patient and Family Support Worker. Gill’s role will be to...
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Genzyme Announces Positive New Data from Two Phase 3 Studies for Oral Eliglustat Tartrate for Gaucher Disease
19 February 2013
CAMBRIDGE, Mass. – Genzyme, a Sanofi company, announced positive new data from the Phase 3 ENGAGE and ENCORE studies of eliglustat tartrate,...
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Seasonal Greetings and Christmas opening hours
19 December 2012
The Gauchers Association would like to take this opportunity of wishing you Seasonal Greetings and very best wishes for 2013. We should also...
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Product Alert for Gaucher Patients and Families
14 December 2012
Dear all, We have been alerted to the existence of another pharmaceutical product called Zavesca that is causing some confusion amongst Gaucher...
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Gaucher Disease scoops Medical Research Grant
13 December 2012
In December 2011, the Medical Research Council (MRC) announced a £60m four-year investment in a Stratified Medicine initiative. Professor Tim...
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Genzyme Gaucher Generation Program Awards 2012
03 December 2012
Genzyme Honors Innovation in Gaucher Disease Research through Its 2012 Gaucher Generation Program Awards Genzyme, a Sanofi com...
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European Commission denies Taliglucerase (Elelyso) market approval for Type 1 Gaucher Disease
07 November 2012
On 3 July 2012, the Committee for Medicinal Products for Human Use (CHMP) recommended the refusal of a marketing authorisation for the medicinal pr...
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The National Collaborative Study for Lysosomal Storage Disorders (NCS-LSD)
06 November 2012
In 2005, the Peninsula Medical School, in collaboration with the Specialist Treatment Centres for Lysosomal Storage Disorders in England, proposed...
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Patient Advocacy Leadership award from Genzyme
19 October 2012
The Association is pleased to announce they have been successful in achieving a Patient Advocacy Leadership award from Genzyme. This two year proje...
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Scottish Medicines Consortium approval of VPRIV
19 October 2012
Shire Human Genetics applied to the Scottish Medicines Consortium (SMC) for approval of VPRIV. The SMC approached The Gauchers Association to provi...
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London Marathon 2013
17 September 2012
The Gauchers Association is pleased to announce a further five Golden Bond places for the 2013 London Marathon. If post London 2012 has inspi...
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Future NHS Funding for Gaucher Disease
28 August 2012
The Future of the Advisory Group for national Specialised Services (AGNSS) Future NHS Funding for Gaucher Disease and other Lysosomal Storage D...
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Transfer of high cost drugs to NICE risks fragmentation of care of rare diseases
28 August 2012
In an ongoing strategy to raise the profile of the Secretary of State for Health, through the Health and Social Care Act 2012, plans to abolish AGN...
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Shire's VPRIV
06 August 2012
At the recent EWGGD meeting in Paris, Shire announced the results of a head to head trial between VPRIV and Cerazyme and the effect that each had o...
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FDA approves new orphan drug to treat a form of Gaucher disease
09 May 2012
The U.S. Food and Drug Administration yesterday approved Elelyso (taliglucerase alfa) for long-term enzyme replacement therapy to treat a form of G...
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Jeremy Manuel "After 21 years"
21 March 2012
I write to let you know that at the most recent Annual General Meeting of the UK Gauchers Association I stood down as its’ Chairman after mor...
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Shire Announces European Approval of Manufacturing Facility for VPRIV
24 February 2012
European Medicines Agency Approval Adds Significant Capacity for the Manufacture of Shire’s Enzyme Replacement Therapies Shi...
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Genzyme Announces FDA Approval of Framingham Manufacturing Plant
08 February 2012
Genzyme, a Sanofi company, announced today that the US Food and Drug Administration (FDA) has approved its manufacturing plant in Framingham, Mass....
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Protalix Announces New Clinical Data on Taliglucerase Alfa to be Presented at the WORLD Lysosomal Disease Network Symposium
08 February 2012
Protalix BioTherapeutics, announced today that new clinical data on taliglucerase alfa will be presented at the 8th Annual Meeting of the Lysosomal...
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HG Shire Announces FDA Approval for Type 1 Gaucher Disease
08 November 2011
HG Shire Announces FDA Approval of VPRIVTM (velaglucerase alfa for injection) for the Treatment of Type 1 Gaucher Disease Click here to see...
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Protalix Submits Reply to FDA Complete Response Letter for Taliglucerase Alfa and Reports Top-Line Results from the Company's Switchover Trial
07 November 2011
CARMIEL, Israel, Aug. 1, 2011 Protalix BioTherapeutics, Inc. (nyse-amex:PLX)(tase:PLX), announced today that it has submitted its reply to th...
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Gauchers Association moves into new offices
21 September 2011
We are pleased to announce that as of the 12th September The Gauchers Association moved their office into new premises. Our new address is: Evesham...
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Protalix BioTherapeutics
11 September 2011
CARMIEL, Israel, September 8, 2011 /PR Newswire/Protalix BioTherapeutics, Inc. (NYSE-AMEX:PLX, TASE:PLX), today announced that an article entitled "Pi...
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Gaucher's Cycle Ride
24 July 2011
Gaucher’s Bike Ride London – Cambridge on Sunday 4th September 2011 Back by popular demand Start: University College School Playing Fields, R...
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Genzyme Celebrates 20th Anniversary of Gaucher Disease Registry with Launch of New Web Platform
19 July 2011
20.06.11 “RegistryNXT!” builds upon largest resource in the world for Gaucher disease data CAMBRIDGE, Mass.--(BUSINESS...
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Pascal is now ADMIN... YIPPPY YEAH!!!
11 July 2011
now working on the website... so good so great ....!!!!
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New EGA Website launched
26 May 2011
The European Gaucher Alliance are delighted to announce the launch of our new website resource. The new site contains a wealth of information with reg...
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Shire launch new information website on Gaucher disease
26 May 2011
This website has been developed for patients, carers and their families, it provides information on VPRIV the enzyme replacement therapy for Type I...
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The LSD Adult Service Birmingham - Launch Meeting
14 February 2011
The Queen Elizabeth Hospital, part of University Hospitals Birmingham NHS Foundation Trust, would like to announce the launch of the Lysosomal Storage...
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Protalix BioTherapeutics Presents Data on the Company's Fabry Program and Oral Enzyme Gaucher Program With Experts in the Field of Lysosomal Disorders
20 January 2011
CARMIEL, Israel, Protalix BioTherapeutics, Inc. announced today that management presented data on the Company's preclinical Fabry program and oral enz...
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EWGGD 2010 - Cologne
19 January 2011
9th international EWGGD meeting will be held in Cologne 30th June-3rd July 2010. For more information please go to the official site here.
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Protalix Completes NDA Submission for taliglucerase alfa for the Treatment of Gaucher Disease
09 December 2010
Protalix Completes NDA Submission for taliglucerase alfa for the Treatment of Gaucher's Disease CARMIEL, Israel--(BUSINESS WIRE)--Protalix Biotherapeu...
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Pfizer and Protalix BioTherapeutics Announce Submission of taliglucerase alfa for European Marketing Authorization for the Treatment of Gaucher Disease
29 November 2010
New York, NY/Carmiel, Israel, November 29, 2010 – Pfizer Inc. (NYSE: PFE) and Protalix BioTherapeutics, Inc. (NYSE-AMEX: PLX, TASE:PLX)today announced...
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Head-to-Head Data Demonstrates Efficacy of VPRIVA
08 November 2010
Cambridge, MA, US – November 4, 2010 – Shire plc (LSE: SHP, NASDAQ: SHPGY), the global specialty biopharmaceutical company, today presented positive n...
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Positive Data from taliglucerase alfa Switchover Trial
08 November 2010
Protalix BioTherapeutics, Inc. announced positive preliminary data from the first 15 patients that completed the Company's nine month, worldwide, mult...
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9th EWGGD Proceedings
20 October 2010
Publication of the Proceedings of the 9th European Working Group on Gaucher Disease (EWGGD) The European Gaucher Alliance (EGA) has published the p...
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European Commission Approval of VPRIV ( velaglucerase alfa)
28 August 2010
Cambridge, MA, US – 26th August 2010 – Shire plc (LSE: SHP, NASDAQ: SHPGY), the global specialty biopharmaceutical company, announced today that the E...
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Shire Receives CHMP Positive Opinion for VPRIV
27 July 2010
Shire plc (LSE: SHP, NASDAQ: SHPGY), the global specialty biopharmaceutical company, announced today that the Committee for Medicinal Products for Hum...
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Cerezyme Emergency Treatment Program (CETP)
10 May 2010
Although the program had stopped in January 2010, it has been reinstated now due to continued shortage of Cerezyme supplies. The program is con...
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Product Supply Update
21 April 2010
Cerezyme Genzyme achieved its goal of building a small inventory buffer during the first quarter. The current shipping allocation of 50 percent of...
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Latest Cerezyme Update
17 February 2010
Latest Cerezyme Update - 17th February 2010: Due to several factors including to improve manufacturing quality systems and perform preventative mai...
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Recommendations for treating patients with Gaucher disease with emerging enzyme products
15 January 2010
A letter to the editor of the Blood Cells, Molecules and Diseases was published on the 18th December 2009 from Professor Timothy Cox, University of Ca...
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European Medicines Agency's COMP Adopts Positive Opinion for the Orphan Drug Designation for Protalix's taliglucerase alfa
13 January 2010
Press Release Source: Protalix BioTherapeutics, Inc. On Wednesday January 13, 2010, 7:30 am CARMIEL, Israel, Jan. 13 /PRNewswire/ -- Protalix Bio...
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Guidelines for the restart of imiglucerase in patients with Gaucher disease: Recommendations from the European Working Group on Gaucher disease
07 January 2010
Blood Cells, Molecules, and Diseases - 18th December 2009: Guidelines for the restart of imiglucerase in patients with Gaucher disease: Recommendation...
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Shire Submits European Marketing Authorization
25 November 2009
Shire Submits European Marketing Authorization Application (MAA) for velaglucerase alfa for the Treatment of Type 1 Gaucher Disease Committee for Medi...
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Force Majeure: Therapeutic measures in response to restricted supply of imiglucerase (Cerezyme) for patients with Gaucher disease
22 October 2009
Based on the findings of the meeting of the EWGGD on Thursday 10th September in Bad Honnef, Germany, this paper includes a position statement based on...
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Cerezyme Emergency Treatment Program
29 September 2009
Dear Friends, I am writing to inform you of some very important developments in the management of the shortage of Cerezyme, which is so severely af...
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Cerezyme Supply Update
19 August 2009
Dear Friends, I am writing to you, at what is a very difficult time for the global Gaucher community, to provide an update on the supply of Cerezyme...
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Shire files treatment protocol
08 July 2009
Shire has filed a treatment protocol for velaglucerase alfa for Gaucher Disease Lexington, Massachusetts, US – July 6th, 2009 – Shire plc (LSE: SHP...
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Protalix Approached by the FDA
05 July 2009
Protalix Approached by the FDA to Consider Submitting a Treatment Protocol for the Use of prGCD in Patients with Gaucher Disease Allowing Expanded Acc...
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Cerezyme Supply
17 June 2009
Genzyme Temporarily Interrupts Production at Allston Plant Genzyme announce temporary closure of Boston manufacturing plant : Read Genzyme p...
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Small Grant for Type 2 Research
30 April 2009
The Gauchers Association has awarded a small grant to The Royal Free Hospital, London to purchase a batch of viral vectors as part of their research i...
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Protalix Switch over Trial
23 March 2009
Protalix BioTherapeutics Announces First Patient Enrolled in Open-Label, Switchover Trial of prGCD for the Treatment of Gaucher Disease Protalix Bi...
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Addenbrookes Homecare
13 February 2009
Addenbrookes is pleased to announce that it has awarded the contract for the provision of homecare for patients with Gaucher disease jointly to Careo...
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New Fundraising Packs
12 January 2009
New fundraising packs – We are pleased to announce the availability of our brand-new fundraising packs. They are available free to all of our members...
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Recieve e-mail alerts.
12 January 2009
Receive e-mail alerts – Sign up for regular news alerts delivered straight to your inbox. Click on the RSS link and as soon as the site is updated, yo...
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New Gauchers News online
12 January 2009
Gaucher News online – Our January 2009 newsletter is now available in three formats – hard copy, e-mail, or as a .pdf file. Choose your preferred opti...
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