- 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
International rare disease events
April 2022
Online Lecture Ylva Söderfeldt: How Patient Organizations Shaped Modern Medicine
21 April 2022, online, more information
International Primary Immunodeficiencies Congress
27 - 29 April 2022, Portugal, more information
Undiagnosed Day
29 April 2022, online, more information
May 2022
International Thalassaemia Day
8 May 2022, online, more information
International Day of Porphyria patients
18 May 2022, worldwide, more information
Webinar - Clinical trials: A Patient's Perspective
20 May 2022, online, more information
RDI Informal Side Event to the World Health Assembly "NETWORKING EXPERTS, CENTERS OF EXPERTISE AND PATIENT ORGANIZATIONS TO STRENGTHEN HEALTH SYSTEMS FOR RARE DISEASES"
24 May 2022, online, more information
Special Policy Webinar for the European Week Against Cancer
31 May 2022, online, more information
June 2022
Annual Meeting of the Brain Tumor Group of SIOP Europe (SIOPE-BTG) in Hamburg, Germany
1 – 12 June 2022, Hamburg, Germany, more information
First World Congress on Rare Skin Diseases
7 - 9 June 2022, Paris, France, more information
International Batten Disease Awareness Day
9 June 2022, more information
International conference on Ectodermal Dysplasias
9 - 11 June 2022, Paris, France, more information
20th International Symposium on Pediatric Neurooncology (ISPNO 2022)
11-15 June 2022, Hamburg, Germany, more information
HTAi 2022 Annual Meeting
25 - 29 June 2022, Utrecht, Netherlands and online, more information
July 2022
3rd International XLH Symposium
1 July 2022, Dublin, Ireland, more information
11th International Prader-Willi Syndrome Organisation Conference!
6 – 10 July 2022, University of Limerick, Ireland, more information
August 2022
PRISMS 2022 International Conference
4-6 August 2022, Dallas, Texas, USA, more information
September 2022
International Congress on Porphyrins and Porphyrias (ICPP)
4 - 7 September 2022, Sofia, Bulgaria, more information
6th CUTIS LAXA DAYS
14 - 16 September 2022, Ghent, Belgium, more information
Rare neurotransmitter diseases: from novel research to focused treatments through iNTD network strengthening and patient empowerment
29 September -1 October 2022, Hotel M, Belgrade, Serbia and online, more information
October 2022
Innovation Bootcamp in Rare Diseases (IBRD)
11 October 2022, Brussels, Belgium, more information
3rd SMA scientific congress
21-23 October 2022, Barcelona, Spain, more information
16th International Brain Tumour Awareness Week
29 October 2022 - 5 November 2022, worldwide, more information
November 2022
3rd International Muscle-Bone Interaction in Duchenne Muscular Dystrophy Symposium
3 November and 14 November 2022, online, more information
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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