‘No one country or continent can address the challenges of rare diseases alone’
The very notion of rarity means that rare disease communities, experts and industry professionals are often few in number and geographically scattered. This means people living with a rare disease still remain vulnerable and marginalised, as often no one country, nor continent have the critical mass and knowledge alone to address the challenges of living with a rare disease.
The need for collaboration for rare diseases has been recognised and action has begun to take place within certain fields, for example in research through IRDIRC, in connecting people globally through Rare Diseases International, RareConnect and Rare Disease Day and in industry efforts through IFPMA’s working group for rare diseases.
However, more needs to be done on a global level. There is still an urgent need for a global platform in order to:
- To share the scarce knowledge that we already have
- To explore what more could be done or developed to advance knowledge of rare diseases at a global level
- To connect rare disease stakeholders across borders and diseases
- To create synergies with other stakeholders to mutually exchange knowledge and expertise
- To receive recognition and attention at the UN level, where rare diseases remain an area little explored, with great social and economic impact