Timed to coincide with the United Nations Rare Disease Day event, the Rare Diseases International 5th Annual Meeting took place at the Microsoft Global Headquarters in New York on 20 February.
The day began with RDI’s General Assembly and Membership Meeting, a closed session for RDI members only which gathered 40 patient advocates representing 32 umbrella organisations from 26 countries around the world. Durhane Wong-Rieger, Chair of the RDI Council, welcomed guests and officially opened the meeting. A summary of 2018 was presented by Paloma Tejada, Director, RDI, followed by an overview of the activity plan for 2019. The newest RDI council members, Jesús Navarro and Rachel Yang, introduced themselves to the members. The meeting concluded with the adoption of the Activity and Financial Report for 2018 and the Work Programme: Action Plan and Budget for 2019, by all members present.
Members were also invited to attend the official launch of the Global Commission to End the Diagnostic Odyssey of Children with a Rare Disease’s digital roadmap for shortening the time to diagnosis for children with rare diseases worldwide. The roadmap provides actionable recommendations to overcome the barriers to diagnosis through three technology pilot programs. Read more about the Global Commission and the Year One Report here.
The afternoon session was attended by over 80 delegates from member and non-member patient groups, as well as US-based INGOs, representatives from industry, partner organisations, and other stakeholders. This was an interactive session designed to encourage sharing of experiences and the development of dialogue and networks. Opening the event, Durhane Wong-Rieger gave an overview RDI’s vision and plans going forward. Durhane said, “RDI started as an idea in 2015 and has grown into much more than that over the past few years. With RDI becoming legally incorporated towards the end of last year, we are at the start of a very exciting time for the organisation”.
Yann Le Cam then gave an overview of the High-Level Event of the NGO Committee of Rare Diseases at the United Nations, taking place the following day and explained how this event plays within plans to give visibility to rare diseases within the UN system. He also described RDI’s strategy to advocate for rare diseases amongst Member states and UN agencies, towards a UN General Assembly Resolution on Rare Diseases.
The following session revolved around the concept of Universal Health Coverage and plans to collaborate with the World Health Organisation. Durhane Wong-Rieger described RDI’s strategy to include rare diseases in the UN Political Declaration on UHC which will be adopted by Member States in September this year. Read the draft Executive Summary of RDI’s position on Rare Diseases and Universal Health Coverage here.
Cynthia Madaraog, President of the Philippines Society for Rare Disorders, gave a poignant testimony of the diagnostic odyssey of her son living with Pompe disease and described how rare diseases are being successfully integrated into the Philippines national health system thanks to the advocacy work of her organisation. A highlight of the afternoon was the announcement that the Philippines Rare Disease Act had passed that day.
Her presentation was followed by Lieven Bauwen of the International Federation for Spina Bifida and Hydrocephalus, who suggested ways to include rare diseases in the global disability agenda using the UN Convention on the Rights of People with Disabilities.
The last session consisted of a number of presentations from RDI members from the Asia Pacific (APARDO), Ibero America (ALIBER) and Africa (Africa-Rare.org) sharing their experiences of establishing and growing rare disease patient networks at a regional level. They shared some important insights into the challenges they face, but also the positive impact they have been able to create for patient advocates locally.
Summing up the day, Paloma Tajeda, Director, RDI, said “It was fantastic to have so many people passionate about improving the lives of people living with a rare disease and committed to the work of RDI together in one place. Whilst we connect regularly by email, the benefits of meeting face-to-face cannot be underestimated. The energy and enthusiasm in the room were infectious and today’s meeting has been a great start to 2019 for RDI”.
- Towards a United Nations Resolution on Rare Diseases: Objectives, Progress, Working together – Yann Le Cam
- Overview of High-Level Events of the NGO Committee for Rare Diseases at the United Nations – Yann Le Cam on behalf of Anders Olauson
- The Universal Health Coverage Political Declaration: An opportunity for rare diseases – Durhane Wong-Rieger
- Integration of Rare Diseases in the Philippine National Health System – Cynthia K. Magdaraog
- Including Rare Diseases in the Disability agenda using the UN Convention on the Rights of Persons with Disabilities – Lieven Bauwens
- Asia Pacific Alliance of Rare Disease Organizations (APARDO) – Durhane Wong-Rieger
- Rare Disease African Alliance (Africa-Rare.org) – Kelly du Plessis
- Iberoamerican Rare Disease Alliance (ALIBER) – Jesús Navarro
Watch the recording of the afternoon event below.