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Promoting awareness, pioneering research and providing support and information for those affected by Gaucher disease.


Telephone: 01453 549231

Rare Disease Day 2018

28th February 2018

The Theme for Rare Disease Day 2018 is Research, continuing on from 2017.

Rare disese research contributes to the development of diagnostic tools, treatments and cures, as well as improved health and social care for patients and their families.

The patient community needs researchers.  They discover diseases and develop treatments and cures.

Researchers also need patients and rely upon their participation to ensure research is meaningful.  Rare diseasese research is not done for the sake of creating knowledge; the knowledge generated is only useful if it is translated into real benefits for patients.

Patients are not only subjects but also proactive actors in research:

To find out more click here

Why not take part in an interactive face paint social media campaign to raise awareness of rare diseases and show your support for the rare disease community! Show your rare. Show you care.

Take part in the #ShowYourRare campaign during the entire month of February 2018. Download the Show Your Rare information sheet!

If you would like to get invovled and organise an event please contact Sarah in the office for a fundraising pack and don't forget to send us your photos! 01453 549231