- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
EURORDIS Membership Meeting/General Assembly
EURORDIS General Assembly 2022
The next EURORDIS General Assembly will take place online on 18 May 2022.
- Agenda
- Register
- Candidates to the EURORDIS BoD 2022
- How to vote in Alphavote - English instructions - French instructions
- Resolutions EURORDIS General Assembly 2022
- Financial Report
- EURORDIS -Regulated conventions
- Activity Report 2021 and Work Plan 2022
EURORDIS Membership Meeting
The next EMM will take place face to face in 2023, in Stockholm (dates tbc)
Every other year, the EURORDIS Membership Meeting provides over 200 patients, patient organisations, policy makers and other stakeholders with networking opportunities and capacity-building workshops to improve the lives of those living with a rare disease.
The EURORDIS Membership Meeting workshops are designed to allow patients to develop the knowledge and ability to advance policies and services for rare disease patients in their country and local communities. The EURORDIS Membership Meeting provides an opportunity for EURORDIS members to network, sharing best practices and increasing knowledge of issues integral to member organisations and the rare disease community and environment in each member’s country.
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Previous Membership Meetings/ General Assemblies:
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative