aHUS is rarer than rare
In patient advocacy for rare diseases like aHUS there seems to be a background cycle to each year,
As 2017 is starting to draw to an end, the time is approaching to start looking towards the New Year.
In 100 days it will be Rare Disease Day again, on 28 February.
Rare Disease Day 2018 will , as in 2017 , again have “RESEARCH ” as its core theme*.
This time the aHUS community approaches it with it own research agenda, a legacy of 2017 patient engagement in support of the day.
aHUS is a very rare disease, it is rarer than rare, as one of the alliance’s most well read news items of 2017 discusses.
What is a rare disease? What is an orphan drug? What is ultra rare? Who decides?
To find out more it can be read here .
*an extract of the announcement of the theme for Rare Disease Day 2018.
“The theme for Rare Disease Day 2018 is…
There is so much to be said in the fight to increase rare disease research that the theme for Rare Disease Day 2018 is research, continuing on from Rare Disease Day 2017!
Rare disease 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 reply upon their participation to ensure research is meaningful. Rare disease 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.”
For more information about Rare Disease Day read at this link click here
