Rare Diseases International Actions
- Maintenance a Rare Diseases International website with basic information about the initiative and a listing of all member associations
- Distribution of a brochure on Rare Diseases International, to inform existing members and recruit new ones.
- Maintenance and moderation of a Rare Diseases International mailing list to include all contacts in member organisations for an efficient exchange of information
- Organisation of regular Rare Diseases International Meetings, back to back with existing conferences such as the IRDiRC conference in 2014.
- Encourage and facilitate regional networking e.g. IberoAmerican Alliance or Pan-Asia Alliance
- Encourage and facilitate capacity building of members e.g. Short-Term Exchange & Internship Capacity Building Programme between member organisations
- Promotion of Rare Disease awareness worldwide through active participation in and the promotion and expansion of International Rare Disease Day
- Development and adoption of a Joint Declaration “Rare Diseases: an International Public Health Challenge”
- Potential drafting of position papers at the initiative of any member organisation
- Introduce Rare Diseases International to International multilateral organisations such as the United Nations Economic and Social Council (ECOSOC) and the World Health Organisation (WHO)
- Coordination between Rare Diseases International member organisations with respect to participation in the International Rare Diseases Research Consortium (IRDiRC)
- Partnership with Orphanet
- Partnership and coordinated liaison with the International Association of Patient Organisations (IAPO) for conferences, policy and WHO liaison
- Coordination between Rare Diseases International member organisations with respect to the participation in International Conference on Rare Diseases and Orphan Drugs (ICORD)
- Introduce Rare Diseases International to IFPMA, ESHG