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:
The Alan Gordon Memorial Award was established in memory of our first treasurer, Alan Gordon, who died in December 1995. Alan and his wife Gloria were founding members of the Gauchers Association. Find out more