Use of Collected Funds

Operating costs to organise and host the EURORDIS Awards & Black Pearl Evening will be covered by corporate philanthropy. All net funds will be allocated to the actions outlined below.

The net proceeds collected from the Black Pearl Evening will be used to support or initiate the following three actions:

  • Breaking the isolation of rare disease patients and their families through the development of national or European networking and international patient communities;
  • Empowering leaders of rare disease communities through training, capacity-building activities and exchange to foster their research, therapeutic development and health policy activities;
  • Increasing public awareness through information and our international communication campaign, Rare Disease Day, which takes place every year on the last day of February

See our different actions here: