I’ve been involved in the recognition and celebration of Rare Disease Day, which is today, for the past five years.
The main objective of the day is to raise awareness amongst the general public and decision-makers about rare conditions and their impact on patients’ lives. This day brings the rare disease community together to show the world that although the incidence and prevalence of any given rare condition might be low, rare diseases collectively affect a large part of the population.
I first learned of the campaign myself as a Peace Corps volunteer with the Romanian Prader-Willi Association. I helped update the international Rare Disease Day website with the events in Romania and took part in conferences throughout the country.
Today, I'm back in Romania, but this time as a central part of the team leading the campaign for EURORDIS, Europe's Rare Disease Organisation, who created Rare Disease Day.
It's my job in 2014 to present EURORDIS' international message, in this seventh year of the campaign. Progress has been made both in Romania, with the creation of a rare disease information center, NoRo, and throughout the world as activities this year are taking place in over 80 countries, the highest participation ever.
So where do we go from here?
EURORDIS is now working to organize a new network called Rare Diseases International, which will be an informal network of rare disease patient organisations to form the global alliance representing patients & families of all nationalities across all rare diseases.
Just as Rare Disease Day has broken down borders and brought people affected by rare conditions together, Rare Diseases International aims at:
- building capacities of patient group members
- becoming the global voice of people living with rare diseases
- promoting rare diseases as an international public health priority.
Part of the action plan for Rare Diseases International includes the promotion of rare disease awareness worldwide through active participation in and the promotion and expansion of International Rare Disease Day to become officially recognized by the World Health Organization (WHO).
We’ve come far in raising awareness over seven Rare Disease Days. We must capitalize on that momentum, continue to grow the day, unite internationally, and become recognized by the WHO, just as breast cancer or AIDS is recognized as an international public health priority.
An untapped opportunity also exists for patient organisations to raise money around the day for their activities or research efforts through innovative mechanisms like crowdfunding.
Rare Disease Day would not be possible without the continuous efforts of patient organisations and individuals around the world, building awareness locally for people living with a rare disease and their families. We can stand together proudly today and look toward a future that will include further international cooperation and recognition.
Together, we are stronger.
Is someone in your life affected by a rare condition? Please tell us about it in the comments.
Visit RareConnect where you can find online patient communities for 52 separate rare conditions.
- Join the discussions that are connecting the rarest of rare diseases - September 16, 2016
- The pain of finding acceptance with Apert syndrome, a facial difference - September 26, 2014
- How Jonah’s parents are connecting families with his rare disease -and how you can too - May 23, 2014
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