Presentations from the EURORDIS Membership Meeting 2017 Budapest
EMM 2017 Plenary: EURORDIS 20th Anniversary
Speakers: Dorica Dan, Avril Daly & Yann Le Cam
Workshop I : European Reference Networks, Hopes & Dreams: Let’s make it happen!
Speakers: Matt Bolz-Johnson, Sofia Douzgou, Maurizio Scarpa, Luca Sangiorgi, Claudia Sproedt, Courtney Coleman, Amanda Bok & Victoria Hedley
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Introduction, Matt Bolz-Johnson, Healthcare & Research Director, EURORDIS

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Diagnosis: Rare Malformation ERN, Sofia Douzgou, Manchester Centre for Genomic Medicine

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Treatment: Rare Metabolic ERN, Maurizio Scarpa, Coordinator MetabERN

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Research: Rare Bone ERN, Luca Sangiogi, Head of Medical Genetic Department, Rizzoli Orthopaedic Institute

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Rare Renal ePAG, Claudia Sproedt, FEDERG

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Rare Lung ePAG, Courtney Coleman, European Lung Foundation

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Haematology ePAG, Amanda Bok, European Haemophilia Consortium

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The operationalisation of an ERN, Victoria Hedley, University of Newcastle, RD-Action , UK

Workshop 2: Hope & Happiness are Part of the Treatment
Speakers: François Houÿez, Tuy Nga Brignol, Rob Camp, Sieta de Vries, Yann Le Cam & Sandra Courbier
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Introduction: Reflection on NATC, François Houÿez, Treatment Information and Access Director, Health Policy Advisor, EURORDIS

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Case study: a mushroom to treat muscles? Tuy Nga Brignol, AFM-Telethon, France

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The role of the Herbal Medicinal Product Committee at the EMA, Rob Camp, DITA Task Force

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Patient questionnaires: standards and requirements, Sieta de Vries, University Groningen, The Netherlands

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The quest for a holistic approach to being well, Yann Le Cam, Chief Executive Office, EURORDIS

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Survey on complementary and alternative therapies: preliminary results, Sandra Courbier, Surveys and Social Studies Manager, EURORDIS, Rare Barometer Leader

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Trends in acupuncture publications over the past 20 years, Tuy Nga Brignol

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Another way to manage pain in neuromuscular diseases, Tuy Nga Brignol

Workshop 3: Survival Kit for Small Patient Organisations
Speakers: Claudia Crocione, Oliver Timmis, Lara Chappell & Claas Roehl
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Introduction: Patient organisation self diagnosis, Claudia Crocione, HHT Europe

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Take a look on the inside - is it time to start up again? Case study, Claudia Crocione

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Training Volunteers, Claudia Crocione

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Turning members into active volunteers: People raising and strategies associated, Oliver Timmis, AKU Society, UK

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Hiring staff, Oliver Timmis

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Communication: creating a positive image and impact, Lara Chappell, Communications Director, EURORDIS

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Fundraising strategies, Claas Röhl, NF Kinder, Austria

Workshop 4: Social Revolution
Speakers: Ildiko Vajda, Sandra Courbier, Erwan Berjonneau, Raquel Castro, Martina Fuga & Eva Bearryman
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Introduction, Ildiko Vajda, VSOP, Netherlands

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Survey results: Juggling care and daily life, Sandra Courbier, Surveys and Social Research Manager, EURORDIS, Rare Barometer Leader

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Survey results: Impact of rare diseases on well-being and mental health, Erwan Berjonneau, Research Executive for the Rare Barometer Programme

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Survey results: The challenge of coordination of care, Raquel Castro, Social Policy Senior Manager, EURORDIS

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Survey results: The challenge of working while living with a rare disease, Sandra Courbier

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Inspirational campaigns using humour to raise awareness, Martina Fuga, CoorDown Board, delegate for communication, Italy

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Disseminating survey results on social media, Eva Bearryman, Communications Manager, EURORDIS

Page created: 01/06/2017
Page last updated: 07/06/2017