May. 28, 2015
Posted by Jennifer Huron
Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today. More than 60 patient representatives from 30 countries are gathering in Madrid, Spain for the inauguration of Rare Diseases International (RDI) and to adopt a joint declaration 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. The National Organization for Rare Disorders (NORD) will represent the U.S. and the 30 million Americans with rare diseases.
“RDI creates a united global patient voice for all people living with a rare disease around the world, including those who don’t have a voice today, and works to turn ignorance, isolation and exclusion into knowledge, solidarity and hope,” says Yann Le Cam, Chief Executive Officer of EURORDIS, the European Organisation for Rare Diseases.
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 Organization (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.
RDI brings together umbrella patient organizations 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 50 are expected to join the initiative before the end of the year.
“NORD is pleased to join Rare Diseases International and to collaborate with leading patient advocacy groups from around the world to help make rare diseases an important global public health priority,” said Peter L. Saltonstall, President and CEO of NORD.
RDI is a EURORDIS initiative, created in partnership with national alliances with which EURORDIS has signed agreements that include the establishment of RDI as one of the common objectives. The preliminary phase of the initiative has been steered by EURORDIS and national rare disease alliances from the U.S. (NORD), Canada (CORD), Japan (JPA), China (CORD), India (I-ORD), the Ibero-American pan-regional alliance (ALIBER) and the International Federation for Epidermolysis Bullosa (DEBRA International).
The launch meeting is also the opportunity for patients to hear from other stakeholders and potential partners, namely the International Federation of Pharmaceutical Manufacturers Associations (IFPMA), the International Conference on Rare Diseases and Orphan Drugs (ICORD) and the International Rare Disease Research Consortium (IRDiRC). In the coming years, RDI aims to structure dialogue with industry, streamline the organization of international conferences, increase patient representation in research funding bodies and promote rare diseases within the UN system.
The next annual meeting of RDI will take place in May 2016 in Edinburgh, UK alongside the European Conference on Rare Diseases & Orphan Products (ECRD 2016 Edinburgh). Until then, members and those interested in the initiative will be able to meet at other relevant international conferences including ICORD Mexico, NORD Summit, IRDiRC and the World Orphan Drug Congress.
For more information visit: http://www.eurordis.org/content/rare-diseases-international
Venue of launch:
Hotel Rafael Atocha
Calle Méndez Álvaro, 30
In the U.S., a disease is considered rare if it affects less than 200,000 people. More than 7,000 different rare diseases have been identified to date, affecting over 60 million people in Europe and the U.S. alone. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offering inadequate and research limited. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research.
EURORDIS, the European Organisation for Rare Diseases, is a non-governmental patient-driven alliance of patient organisations representing over 600 rare disease patient organisations in more than 60 countries. EURORDIS represents the voice of an estimated 30 million people living with a rare disease in Europe. Follow @eurordis or see the EURORDIS Facebook page. For more information visit: www.eurordis.org.
About National Organization for Rare Disorders (NORD)
Established in 1983, the National Organization for Rare Disorders (NORD)® is the primary nonprofit organization representing all patients and families affected by rare diseases in the U.S. NORD is committed to the identification, treatment and cure of all 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people. NORD provides programs of advocacy, education, research and patient/family services to improve the lives of all people living with rare diseases. NORD represents more than 230 disease-specific member organizations and partners with many other organizations in specific causes of importance to the rare disease patient community. Join NORD at www.rarediseases.org/ and on Twitter at @RareDiseases.
For Rare Diseases International (RDI): Paloma Tejada, +41 763604725, [email protected]
For National Organization for Rare Disorders (NORD): Jennifer Huron, 203.304.7258, [email protected]