Vytenis Andriukaitis, a former European health commissioner who is now a European parliamentarian, is all for introducing an EU rare disease plan that would pull together both national and European initiatives, and include social care such as psychosocial support for families.
There are between 6,000 and 8,000 known rare diseases and while one rare disease may affect only a few patients, others may affect as many as 245,000 in Europe. Developing European infrastructure and approaches to tackling such diseases would accelerate diagnosis and treatment for all patients, he said.
According to Tumienė, an EU plan should establish minimal requirements on equity and sharing of best practices. It should also future-proof existing tools, Anne-Sophie Lapointe, head of rare diseases at the French health ministry, said. When talking about an EU plan, “we have to think about the future,” Lapointe said, adding that she is a “bit afraid” of the JARDIN project ending by 2027.
Building on national plans
The good news is: Europe has a wealth of national plans to build a European plan, if it so wishes.
However, national rare disease plans vary wildly across the bloc. For example, nine national plans have now expired, Tumienė said, while two member countries — Sweden and Malta — don’t have one. (Sweden has recently commissioned a rare disease strategy.)
“All your national paths are a mess,“ Andriukaitis said. “In many countries and for a large number of rare diseases, both clinical guidelines and care pathways are missing, despite [having] plans,” he added.