Presentations from the EURORDIS Membership Meeting 2019 Bucharest
EMM 2019 Plenary: Holistic and Integrated care
Launch of Position Paper
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Opening speech, Avril Daly, EURORDIS & Retina International, Ireland

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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
How to make the best use of the position paper for a bigger impact
Workshop 1 : How to make the best use of the EURORDIS Position Paper on Holistic Care
Speakers: Raquel Castro, Lene Jensen
Workshop 2: Why create a Community Advisory Board
Speakers: François Houÿez, Rob Camp, Natacha Bolaños, Karen Druckman, Andreas Hager, Matteo Scarabelli
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The EUROCAB Programme, Rob Camp, EURORDIS

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Learn successful examples of patient advocacy via CABs – Natacha Bolaños, Lymphoma Coalition Europe CAB

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Learn successful examples of patient advocacy via CABs – Andreas Hager, Cystic Fibrosis Europe CAB

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Getting started: call for volunteers, Karen Druckman, HHT CAB

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CAB metrics, Rob Camp, François Houyez, EURORDIS

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EuroCAB training – Rob Camp, EURORDIS

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EUROCAB: PRACTICAL AND FINANCIAL ASPECTS, Rob Camp, François Houyez, EURORDIS

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WHAT ARE COMMUNITY ADVISORY BOARDS? – François Houyez, EURORDIS

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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
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Setting the scene, Matt Bolz-Johnson, EURORDIS
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ERN Board of Member States Representative, Dr. György Pfliegler, Hungary

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Clinical Lead (ERN), Dr Birute Tumiene, Clinical Geneticist, Vilnius University Hospital & ERN Board of Member States Representatives, Lithuania

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Patient Representative, Ms Petia Stratieva, ERN EYE ePAG Representative, Retina International & Bulgarian National Alliance, Bulgaria

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Dr Laura Damian, HCP Member of ERN ReCONNECT in Romania

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Dorica Dan, Romania & Gábor Pogány, Hungary, Patient Representatives

Workshop 4: Contribute to the next 10 years of Rare Disease Policy: Rare 2030 Foresight Study
Speakers: Anna Kole, Giovanna Giuffrè
Page created: 21/05/2019
Page last updated: 23/05/2019