International Gaucher Day 2018

International Gaucher Day (IGD) will once again be celebrated on 1st October 2018

Happy International Gaucher Day!

#IGD2018 #RARESTARS #RAREBUTNOTALONE

This year’s theme is Rare Stars – Giving hope improving lives

Here are the Rare Stars videos produced by the EGA to celebrate #IGD2018

#RareStar Malcolm Johnson has worked at Sanofi Genzyme since it started and says it's been a privilege to have seen and helped the growth of the Gaucher patient organisations locally and internationally - Watch his video here

 

 

#RareStar Helen Whitehead, our very own Patient and Family Support Worker loves supporting patient and families - Watch her video here

 

 

#RareStar Biljana Živojinović is head nurse of Haematology for the Clinical Centre of Serbia and works hard with the aim to improve conditions and quality of life of patients - Watch her video here 

 

 

#RareStar Rami Ballout is a newly graduated medical student interested in lysosomal storage diseases, he is also the face of the IGD 2018 poster - watch his video here 

 

 

#RareStar Dr Norman Barton began developing treatments for Gaucher disease almost 50 years ago and within his role at Shire continues to work on improving treatment options and speeding up diagnosis for patients with Gaucher disease today - watch his video here

 

#RareStar Lucy McKay is a doctor and director of Medics4RareDiseases who are working hard to change the attitude towards rare diseases in medical education in both the UK and internationally #DareToThinkRare - Watch Lucy's video here

 

 

#RareStar Dr Simon Waddington, who together with Dr Ahad Rahim have worked together for nearly 10 years towards curing Gaucher disease with gene therapy - watch his video here 

 

 

#RareStar Chris Hendriksz moved with his family to the UK over 20 years ago due to his son having a rare disease that the exact cause was never identified.  Chris now develops and implements global medical educational programmes for those in low income countries - Watch his vido here

 

#RareStar Betina Hernandez has worked in the field of rare diseases for the past five years with Pfizer that has given her amazing opportunities to get invovled with the Gaucher community around the world - Watch her video here 

 

 

#RareStar Christine Dali is a neuropaediatrician working for Orphazyme to find another treatment for Gaucher disease - Watch Christine's video here 

 

 

International Gaucher Day (IGD) was launched by the European Gaucher Alliance (EGA) in 2014 and is celebrated annually on 1st October to raise awareness of Gaucher disese.

The EGA believe that the patient community will benefit greatly from learing about what inspires and motivates people to work in the field of Gaucher, so the theme of the #IGD2018 #RareStars campaign will focus upon doctors, nurses, scientists, patient advocates and those involved in the pharmaceutical industry, who all work hard to improve the quality of life for the entire Gaucher patient community. During the run up to IGD the EGA will be producing short videos from some inspirational figures working within the Gaucher field and and from the pharmaceutical industry; showing their motivatio, experiences and hopes for the Gaucher community. We will be sharing these videos on our Facebook and Twitter page, so please look out for them and share.

Get Involved......

Why not get involved and help to raise awareness of IGD 2018 and Gaucher disease, here are a few simple ideas:

We would love to hear who your #RareStar is so we can share on the day; this can be anybody who has helped to make a difference to you and your family on your Gaucher journey; maybe a doctor, nurse, teacher, family member or best friend, please let us know by emailing your #RareStar to Sarah Allard at sarah@gaucher.org.uk

Social Media....

#IGD2018 #rarebutnotalone #rarestars 

We would love you to use your own social media platforms, Facebook, Twitter, Instagram to share content and raise awareness by using the above hashtags

 You can download all the materials for IGD 2018 by clicking here and visiting the EGA website

If you have any questions please contact Sarah Allard on Sarah@gaucher.org.uk or 01453 549231