Posted - September 2015 in HSPRF News
A global voice for people with rare diseases
The launch of Rare Diseases International – a global voice for rare disease patients – was announced on 24 May, 2015 in Madrid, Spain.
Over 60 patient representatives from 30 countries were present 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 aims to represent rare disease patients and families from all over the world to provide a voice as well as visibility to rare diseases in the global health agenda.
RDI is a EURORDIS (European Organisation for Rare Diseases) initiative, created in partnership with national alliances. The preliminary phase of the initiative is steered by EURORDIS and national rare disease alliances from the US (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 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, in international institutions such as the World Health Organisation and the United Nations Economic and Social Council; 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.
Along with advocating for rare diseases in international forums and multilateral institutions, they will also coordinate and participate in the International Rare Disease Research Consortium (IRDiRC). RDI will enhance partnerships and liaise closely with Orphanet, International Alliance of Patients’ Organizations (IAPO), International Conference on Rare Diseases & Orphan Drugs (ICORD), International Federation of Pharmaceutical Manufacturers & Associations (IFPMA), International Federation of Human Genetics Societies (IFHGS).
“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.
Rare Voices Australia (RVA) Executive Director and Co-Founder, Megan Fookes, attended the Madrid meeting and welcomed the global initiative. Megan commented that a top priority for Australia needs to be for the Federal Government to create, establish and develop a national policy on rare diseases as this currently does not exist.
The launch of Rare Diseases International