EURORDIS-Rare Diseases Europe and the Ågrenska Foundation of Sweden, co-founders of the NGO Committee for Rare Diseases – a Substantive Committee of CoNGO has published the Report from the inauguration of the NGO Committee for Rare Diseases.The report consists of the conclusions of this event which is now available online.
The launch of the NGO Committee for Rare Diseases took place on 11 November 2016 at the United Nations headquarters in New York. Around 100 participants from around the world, and more than 1,600 people connected to the live webcast through the Committee’s dedicated website.
A number of representatives from the rare disease community presented their strategies and vision for tackling rare diseases. According to the report there was a clear message of unity in diversity and that “differences in values and priorities are not an obstacle to working together.” The report also underscored that the complexity and diversity could be an advantage as this interectionality can lead to strong commitment from the grassroots to the global level.
According to the report, an international rare diseases community is emerging, increasingly organised to take global action. A number of initiatives in various fields were presented at the meeting such as the International Rare Diseases Research Consortium (IRDiRC), the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA),Orphanet, the reference global database for information on rare diseases and the International Conference on Rare Diseases and Orphan Drugs (ICORD).
The report declared that the main mission is thus to:
- “Bring visibility and understanding about rare diseases to the United Nations.
- Act as an advocacy platform for the issue of rare diseases, creating a space for collaboration.
- Collect and share accurate information about rare diseases and associated challenges.
- Elevate rare diseases as a priority within global public health, research, medical care, social care and social integration.”