Launch of Rare Diseases International at EURORDIS Membership Meeting

February 2, 2015   World

International Federation for Spina Bifida and Hydrocephalus | Source

Rare Diseases International28 May 2015 // Over 60 patient representatives from 30 countries were gathered in Madrid, Spain at the EURORDIS Membership Meeting Madrid 2015. During the meeting the inauguration of Rare Diseases International (RDI) took place and a joint declaration was adopted to advocate for rare diseases as an international public health priority. RDI represents patients and families of all nationalities across all rare diseases. It will be the voice of all people living with a rare disease around the world today and will work to give visibility to rare diseases in the global health agenda. IF is a full member of EURORDIS since 2013 and will now apply for RDI membership. IF fully supports the principles of the joint declaration, which includes prevention and the right to health, two of IF's strategic objectives.

RDI brings together umbrella patient organisations representing patient groups at the national and regional level, as well as international rare disease-specific federations from around the world. To date, 20 such groups have formally signed up to be a member of RDI and another fifty are expected to join the initiative before the end of the year.

The main objectives of RDI are:

  • To promote rare diseases as an international public health and research priority by raising public awareness and influencing policy-making;
  • To represent members and people living with a rare disease at large, in international institutions and forums, such as the World Health Organisation (WHO) and the United Nations Economic and Social Council (ECOSOC); and
  • To enhance the capacities of members to improve the lives of those living with or affected by a rare disease through information exchange, networking, mutual support and joint actions.

For more information visit: http://www.eurordis.org/content/rare-diseases-international