The 3rd EUROPLAN National Conference took place on 14 December 2017 in Warsaw, Poland. ORPHAN – Polish National Forum for Rare Diseases Therapy – Rare Diseases Poland was the organiser.
Poland has not yet adopted a national plan for rare diseases, though ORPHAN – Rare Diseases Poland and other stakeholders have asked for it for a long time and even made proposals.
ORPHAN is promoting the development of a fundamental doctrine for rare diseases in Poland: “Poland for Rare Diseases”.
In 2016, the Ministry of Health established a Task Force for drafting the Polish National Plan for Rare Diseases in which patients’ representatives from ORPHAN participated in the following sub-groups: Codification/Registry; Reference Centres; Specialised Care, Rehabilitation and Orphan Drugs; Social Care and Education. As of December 2017, the Ministry of Health was still working on a draft “working version”.
The 3rd EUROPLAN conference was the opportunity to take stock of all the work produced so far by all stakeholders to advocate for the adoption of a national plan for rare diseases in order to increase the visibility of patients in the healthcare system and provide them with adequate diagnosis, health care, treatments and social care.
During the conference, an interactive electronic survey tool, MentiMeter, was used to gather participants’ opinions after each session on issues related to improving research and access to care.
The next steps are to agree on a comprehensive Polish National Plan for Rare Diseases with the Ministry of Health. To that end, workshops will be organised in 2018.
Read more: EUROPLAN Conference Report