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EURORDIS - Rare Diseases Europe

Patient Advocacy Organization
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  • Info
  • People 1
  • Initiatives 13
  • Event 1
  • Resources 9

About the organization

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The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. EURORDIS undertakes activities on behalf of its members, notably in favour of: ✔Empowering rare disease patient groups ✔Advocating rare diseases as a public health issue ✔Raising public rare disease awareness, and also that of national and international institutions ✔Improving access to information, treatment, care, and support for people living with rare diseases ✔Encouraging good practices in relation to these ✔Promoting scientific and clinical rare disease research ✔Developing rare disease treatments and orphan drugs ✔Improving the quality of life through patient support, social, welfare, and educational services

Mission : EURORDIS' mission is to build a strong pan-European community of patient organizations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.

Vision : Improve the quality of life of all people living with rare diseases in Europe

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Website

http://www.eurordis.org

Address

96 Rue Didot 75014 Paris, France

Conditions

Rare Diseases and Disorders/Across all conditions

People

Elisa Ferrer

Patient engagement manager

Barcelona, Spain

EURORDIS - Rare Diseases Europe

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Initiatives

Expert Patient and Researcher EURORDIS Summer School

EURORDIS - Rare Diseases Europe

Europe

Mechanisms of Coordinated Access to Orphan Medicinal Products

EURORDIS - Rare Diseases Europe

Europe

  PFMD - Patient Focused Medicines Development

The Synergist, PFMD, National Health Council ,
+ 21

Global

  PE Stakeholder Expectation Matrix

PFMD, EURORDIS - Rare Diseases Europe, Merck Sharp & Dohme (MSD) ,
+ 4

Global

  Pledge to Patients

PFMD, The Synergist, National Health Council ,
+ 15

Global

Currently underway

  SYNaPsE Patient Engagement Global Landscape, Expert Network and Repository

PFMD, Merck Sharp & Dohme (MSD), EURORDIS - Rare Diseases Europe ,
+ 23

Global

  Co-creation of the Patient Engagement "Meta-Framework"

PFMD, NIHR INVOLVE, Drug Information Association (DIA) ,
+ 22

Global

Completed over one year ago

  IMI PARADIGM

Innovative Medicines Initiative IMI, The Synergist ,
+ 42

Europe

Completed less than one year ago

  The Patient Engagement Quality Guidance (PEQG)

PFMD, The Synergist, National Health Council ,
+ 9

Global

Currently underway

  PE Industry training

PFMD, Servier, EUPATI, EURORDIS - Rare Diseases Europe ,
BV
+ 6

Global

  Patient engagement in the regulatory submission phase

BioMarin, Janssen - Johnson & Johnson, PFMD ,
LP
+ 13

Global

Completed less than one year ago

  Patient engagement in protocol design

Evidera, Servier ,
SW
MG
+ 11

Global

Completed less than one year ago

Events

18

Jun02:00 PM

18

Jun02:00 PM

EURORDIS Digital School Webinar: Helping Patient Organisations Plan and Create for Social Media Success

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Resources

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