About the organization
Basic details : 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
Badges earned
Website
Address
96 Rue Didot, 75014 - Paris, FR
People
Initiatives
Expert Patient and Researcher EURORDIS Summer School
PE Stakeholder Expectation Matrix
SYNaPsE Patient Engagement Global Landscape, Expert Network and Repository
Co-creation of the Patient Engagement "Meta-Framework"
Patient engagement in the regulatory submission phase
Events
18
18
EURORDIS Digital School Webinar: Helping Patient Organisations Plan and Create for Social Media Success
Resources
What do stakeholders expect from patient engagement: Are these expectations being met? - Report
03 Sep 2018
Reasonable Legal Agreements between Patient Advocates and Pharmaceutical Companies (Leaflet)
20 Mar 2019
Digital Health from a Patient Perspective with recommendations on digital health
18 Oct 2019 Publication
Report of the Internal consultation on patient engagement sustainability (Expert Patient and Researcher EURORDIS Summer School 2018)
08 Nov 2019 Other
Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review
01 Feb 2020 Publication
Medicines Adaptive Pathways to Patients: Why, When, and How to Engage?
18 Jun 2020 Publication
EURORDIS Open Academy
14 Jul 2020 Learning and training
Mechanism of Coordinated Access to orphan medicinal products (MoCA)
14 Jul 2020 Other
Patients Involved – Between sponsors and participants
16 Jul 2020 Article and blog post