The 2nd EUROPLAN National Conference in Lithuania took place on 16 March 2018, in Vilnius. The organisers were Prof Rimantė Čerkauskienė, Dr Birutė Tumienė, Dr Elena Jurevičienė (Vilnius University Hospital Santaros Klinikos), Mr Danas Čeilitka and Ms Rūta Udraitė-Mikalauskienė (Lithuanian National Alliance for Rare Diseases).
The Lithuanian National Plan for Rare Diseases was adopted in 2012.
The first part of the EUROPLAN conference assessed five years of implementation (2012-2017), achievements made (e.g. designation of 56 Centres of Competences for RDs) and areas of progress. The second part included three parallel sessions: 1) Spina bifida dedicated session, 2) innovations in diagnostics for rare diseases, 3) innovations in rare disease treatments.
This 2nd EUROPLAN National Conference was marked by the adoption of the Memorandum of Actions, including the followings:
- Rare disease acknowledgement and prioritization (in national legal acts).
- Improvement of coordination of healthcare for rare disease patients.
- Further development of Competence Centres in the University Hospitals.
- Assurance of timely access to high quality healthcare services for rare disease patients.
- Improvement of healthcare service accessibility for rare disease patients by assurance of proper reimbursement and regulations of healthcare services.
- Coordinated approach to problems related to undiagnosed diseases.
- Expansion of neonatal screening program for congenital diseases.
- Collaboration with Lithuanian and international educational and research institutions.
- Active participation of patient representatives and communities in decision taking and
spreading of information on rare diseases.
- Dissemination of information on rare diseases and national/international activities in the
Read more:EUROPLAN Conference Report
State of the Art Report on Rare Diseases / Lithuania: here.