Retina International was honoured to participate in the launch of the NGO Committee on Rare Diseases at the United National in New York on November 11th. The purpose of this committee is to bring visibility and understanding of rare diseases to the United Nations, 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 Agrenska Foundation (Rare Disease Sweden) and EURORDIS. It is a substantive committee established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations Committee of NGOs (CoNGO).
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).
The launch event brought 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.
Speakers at the event include Abbey S. Meyers, Founder & President Emeritus of the US National Organisation for Rare Disorders (NORD), Marek Plura, Member of the European Parliament, Durhane Wong-Rieger who is President of the Canadian Organisation for Rare Diseases and Member of the Council of Rare Disease International.
Retina International CEO, Avril Daly was a speaker at the event and emphasied the importance of RI being a member Rare Disease International (RDI). In her speech she focused on the need to reach out across boarders to provide support and expertise to those living with Inherited Retinal Disease (IRDs) and all Rare Diseases. “Today’s event provides an important platform to discuss what is a rapidly evolving and particularly dynamic area of healthcare and health innovation. More and more our work is aligned globally and more and more we need to be in contact for advice, support and expertise". She added “While you are dealing with your own reality of living with a rare disease and that of your immediate community - so too are others – across the sea – across borders – across continents. It is this collective reality that motivates us to fight harder for positive change for the whole community. And as a global community we draw on each other’s energy every day by connecting across disease areas - across borders, be they cultural, linguistic or tangible – and the willingness to do this is authentic, necessary and to be supported and respected".
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.”