What and Why?
This is a pioneering initiative and an opportunity for EURORDIS to place the rare disease cause in the forefront of opinion maker’s minds as there are no other pan-European, annual, fundraising galas currently held in Europe to benefit rare disease patients.
The EURORDIS Awards & Black Pearl Evening will be the occasion for EURORDIS to reach out to a new audience about the rare disease cause and promote our continuous plight for the rare disease community.
EURORDIS’s mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and – directly or indirectly – to fight against the impact of rare diseases on their lives.
The EURORDIS Awards & Black Pearl Evening, as its sub-title suggests, will be the occasion for EURORDIS to reinforce its primary role as the largest European patient organisation in the field of rare diseases and provide “Solidarity & Hope for Rare Disease Patients Throughout Europe”.
Indeed, this is a challenging time for the rare disease community. A difficult economic environment is making it especially arduous for patients to access current treatments and services that could save or improve many lives. At the same time, there is greater recognition of the need to address rare disease issues – both for patients support and research activities – throughout Europe. We are encouraged by the European Commission’s policy to make rare diseases a public health priority, and we are committed to actions that make a profound difference in the lives of rare disease patients and their families.
The EURORDIS Awards & Black Pearl Evening is our response to this challenging time and in our opinion will be the most effective means of generating significant financial resources to directly benefit the rare disease community.