The Voice of Rare Disease
Patients in Europe
NGO Committee for Rare Diseases
launches at UN Headquarters
A NGO Committee for Rare Diseases launches this Friday at the United Nations headquarters in New York.
Participate in the launch event online by watching a live web stream from 10:00 – 18:00 EST (New York time) on Friday 11 November.
The goal of the NGO Committee on Rare Diseases is to bring visibility and understanding of rare diseases to the United Nations (UN), a platform where they have received little attention until now. It brings together knowledge and experts to progress towards greater recognition of rare diseases as a global priority in the fields of health policy, research and social and medical care.
The NGO Committee for Rare Diseases was initiated by the Ågrenska Foundation and EURORDIS. It is a substantive committee established under the umbrella of the Conference of NGOs with Consultative Relationship to the United Nations (CoNGO).
Read more about the objectives of the NGO Committee for Rare Diseases.
Rare Diseases at the UN
The Committee will aim to ensure that no one person living with a rare disease is left behind and in turn serves to advance efforts to achieve the UN’s Sustainable Development Goals (SDGs).
Helen Clark, Administrator of the United Nations Development Programme, gave a statement at the recent International Conference on Rare Diseases and Orphan Drugs on the importance of the UN’s SDGs as an opportunity to address the specific issues faced by people living with a rare disease.
Friday’s launch event brings together over 30 leaders from the international rare disease community, including heads of rare disease patient organisations from around the world and international rare disease federations, as well as experts from UN bodies and the European Union. See the full agenda here.
Speakers at the event include Abbey S. Meyers, Founder & President Emeritus of the US National Organization for Rare Disorders, Marek Plura, Member of the European Parliament and Durhane Wong-Rieger, President of the Canadian Organization for Rare Disorders and Member of the Council of Rare Diseases International.
Anders Olauson, Chairman of the Ågrenska Foundation, one of the two founding members of the NGO Committee for Rare Diseases, commented, “Having a rare disease affects all aspects of life; experiences from thousands of families worldwide tell the same story. All areas of life - healthcare, social services, schools, insurances and labour - must work together. Life is holistic, as should care and support be. Working together at the United Nations will make this possible.”
Yann Le Cam, Chief Executive Officer of EURORDIS, the second founding member of the NGO Committee, commented, “We are at the start of a new phase of collective action to elevate the cause of people living with a rare disease to become an international public health priority. An international approach will help to ensure that patients and families are gaining attention, support and care in all countries around the world. The NGO Committee will bring these challenges to the forefront of the UN agenda.”
Eva Bearryman, Communications Manager, EURORDIS