EURORDIS Membership Meeting (EMM) 2019
March 2023
The 2019 EURORDIS Membership Meeting took place in Bucharest, Romania from May 17-18, 2019. This meeting assembled over 200 representatives of people living with a rare disease.
During this event, EURORDIS and its over 800 member organisations released a new position paper entitled Achieving Holistic Person-Centred Care to Leave No One Behind. This paper provides recommendations to the EU, all European countries and all stakeholders within the health and social sector stakeholders on how to accomplish the goal of having holistic care provided to the 30 million people living with a rare disease in Europe, and their families, by 2030.
Many issues were covered during this important event. One of the 4 workshops was entitled European Reference Networks (ERNs) – The Eastern European Countries Dimension, where the topic of ensuring universal coverage of EU Member States in the ERNs was discussed as well as the country-level needs for Eastern European countries to participate more in the ERNs.
On May 16th, prior to the Membership meeting, a European Patient Advocacy Group (ePAG) advocates meeting was held in order to discuss best practices for the work of ePAGs in the ERNs.
Presentations from the EURORDIS Membership Meeting 2019 Bucharest
EMM 2019 Plenary: Holistic and Integrated care
Launch of Position Paper
- Opening speech, Avril Daly, EURORDIS & Retina International, Ireland
- Achieving Holistic Person-Centred Care to Leave No One Behind, Dorica Dan, EURORDIS & Romanian National Alliance for Rare Diseases, Romania, Raquel Castro, EURORDIS, Maria Montefusco, Nordic Centre for Welfare and Social Issues, Sweden
Inequalities & Opportunities
- Results of the survey on social impact of rare diseases – comparing regions of Europe (east/west), Anna Arellanesova, Rare Diseases Czech Republic
- CNA WG Western Balkans, Ivana Badnjarevic, NORBS, Serbia
- Patient Testimony, Bogdana Patrasc, Romania
How to make the best use of the position paper for a bigger impact
- How to make your voice heard, Rebecca Skarberg, OIFE, Norway
- Case study on how to best use the position paper: Holistic care for rare diseases, using regional strategy and case management: Encarna Guillen-Navarro, Hospital Clínico Universitario Virgen de la Arrixaca, Spain
Workshop 1 : How to make the best use of the EURORDIS Position Paper on Holistic Care
Speakers: Raquel Castro, Lene Jensen
- Overview of the position paper and identification of main target audiences with participants, Raquel Castro, EURORDIS
- “Do’s and Dont’s” while presenting the Position Paper to policy makers, Lene Jensen, Rare Diseases Denmark
Workshop 2: Why create a Community Advisory Board
Speakers: François Houÿez, Rob Camp, Natacha Bolaños, Karen Druckman, Andreas Hager, Matteo Scarabelli
- The EUROCAB Programme, Rob Camp, EURORDIS
- Learn successful examples of patient advocacy via CABs – Natacha Bolaños, Lymphoma Coalition Europe CAB
- Learn successful examples of patient advocacy via CABs – Andreas Hager, Cystic Fibrosis Europe CAB
- Getting started: call for volunteers, Karen Druckman, HHT CAB
- CAB metrics, Rob Camp, François Houyez, EURORDIS
- EuroCAB training – Rob Camp, EURORDIS
- EUROCAB: PRACTICAL AND FINANCIAL ASPECTS, Rob Camp, François Houyez, EURORDIS
- WHAT ARE COMMUNITY ADVISORY BOARDS? – François Houyez, EURORDIS
- Can Community Advisory Boards contribute to Health Technology Assessment (HTA)?, Mateo Scarabelli, EURORDIS
Workshop 3: European Reference Networks – The Eastern European Countries Dimension
Speakers: Matt Bolz-Johnson, Dr. György Pfliegler, Dr Birute Tumiene, Ms Petia Stratieva
- Setting the scene, Matt Bolz-Johnson, EURORDIS
- ERN Board of Member States Representative, Dr. György Pfliegler, Hungary
- Clinical Lead (ERN), Dr Birute Tumiene, Clinical Geneticist, Vilnius University Hospital & ERN Board of Member States Representatives, Lithuania
- Patient Representative, Ms Petia Stratieva, ERN EYE ePAG Representative, Retina International & Bulgarian National Alliance, Bulgaria
- Dr Laura Damian, HCP Member of ERN ReCONNECT in Romania
- Dorica Dan, Romania & Gábor Pogány, Hungary, Patient Representatives