EURORDIS MEMBERSHIP MEETING Bucharest, 17-18 May 2019

Workshop on EE Countries , 16th May 2019

Dorica DanEURORDI BoD, president RONARD, RPWA, ARCrare

16th May, Satellite meeting

09.30-12.30 Eastern European Patients Association

Goal: Share common best practices and challenges in RareDisease policy, most Eastern European countries now have anational strategy for Rare Diseases and provide betterhealthcare services to people with rare diseases than in previousyears.

Agenda

• ++Opening of the workshop and presentation of the participants / sharing best practices and challenges;

• Dorica Dan, Romanian National Alliance for Rare Diseases & EURORDIS, representatives from local and national authorities, EURORDIS & EPF

• ++National Alliances round introduction • ++Rare Barometer Study results for EE Countries, Sandra Courbier EURORDIS• ++Coordination of an ERN and National Strategy in Cseck, Milan Macek, ERN Coordinator, Czech

Republic• ++Funding opportunities for EE from EEA grants and the experience of Resource Center for rare

disorders Frambu; Norwegian collaboration with Romania, Hungary, Bulgaria and Check Republic, Lisen Julie Mohr, Frambu, Resource Center for RareDisorders; Norway

• ++Solutions for the management of severe neuromuscular diseases through partnership between patient organization and professionals – Isabela Tudorache, Parent Project Association Romania;

• Challenges and opportunities in the region (Registries, NA, NPRD, case management, home care, CoE, ERN, guidelines, educational programs)

• ++ Questions and answers & Conclusions

1. We all work across borders and cross diseases to improvethe lives of people living with a rare disease.

2. Having the vision to enable better lives and cures forpeople living with a rare disease.

3. Advocate to have holistic care provided to our patients

We are part of the solution

Our patient community have to continue to advocate for asociety that is aware of RD patients’ needs:

✓ To bridge the gaps between health, social and educationalservices;

✓ Access to high quality care according to patients’ needs,effectively and timely provided (treatment, education,employment, leisure, psychological support and all aspects ofsocial inclusion) ;

✓ A society that enables them to fully enjoy their fundamentalhuman rights;

Case study: Romania

www.participrare.ro www.radionoro.ro

HelpLine NoRo

www.edubolirare.ro

We keep our faith and hope!