In light of the COVID-19 pandemic, all EURORDIS events will be held online until May 2021.

We also have a dedicated webinars page where we include upcoming and past webinars that we run to keep you updated about our work, to engage participants in a consultation or to educate on a new topic that is relevant to rare disease patients.

February 2021

Rare 2030 plenary conference: The Future of Rare Diseases Starts Today - Recommendations from the Rare 2030 Foresight Study

23 February 2021 from 13:30 to 18:30 CET

Announcement RARE resized.jpgOnline.

The Rare 2030 Final Event marks the end of this two-year foresight study. It will be the occasion to present the Rare 2030 policy recommendations for a new policy framework in the presence of high-level speakers, such as Frédérique Ries, Member of the European Parliament, and Stella Kyriakides, European Commissioner for Health and Food Safety, to name a few.

Register now!

For more information, please see the Rare2030 website or contact  


EURORDIS Black Pearl Awards

24 February 2021 from 13:30 to 18:30 CET

Announcement BPA resized.jpgOnline.

Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS Black Pearl Awards celebrate the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives.

Register now!

For more information please see the Black Pearl Awards website or email


Rare Disease Week

22 - 25 February 2021

RDW 2021_3.jpg

Online. This is a closed event for the accepted applicants from the Council of National Alliance members.

Organised in the lead up to Rare Disease Day 2021 (28 February), the first Rare Disease Week targets rare disease patient advocates to empower them to participate effectively in advocacy activities and positively impact the lives of people living with a rare disease.

For more information please see here, or email



Rare Disease Day

28 February 2021

RDD 2021_3.jpgOnline.

Rare Disease Day aims to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Since its launch in 2008, thousands of events have taken place worldwide, inspiring hundreds of patient organisations and policymakers and bringing about a change in our societies.

For more information please see the Rare Disease Day website or contact


March 2021

EURORDIS Round Table of Companies

Date to be confirmed.

ERTC_2021.jpgOnline. This is a closed event for members of ERTC.

The EURORDIS Round Table of Companies (ERTC) fosters an educational relationship and a constructive dialogue between EURORDIS and companies addressing rare diseases.

For more information, please contact



May 2021

EURORDIS Membership Meeting

12 – 14 May 2021

MM_2021.jpgOnline. This is a closed event for EURORDIS members.

EURORDIS represents 949 rare disease patient organisations in 73 countries. EURORDIS Membership Meeting is an excellent opportunity for patient organisations to meet other patient advocates, learn from the best in the rare disease community, and get exposed to the latest developments in research, advocacy and evaluation.

Learn more here.


June 2021

EURORDIS General Assembly

17 June 2021

GA_2021.jpgOnline. This is a closed event for EURORDIS members.

Each year, EURORDIS holds the General Assembly, which serves as an opportunity to get a full view of EURORDIS' activities, exchange ideas, elect the EURORDIS Board of Directors (full members only) and understand the action plan for the following year.




June 2022

11th European Conference on Rare Diseases and Orphan Products

17 - 18 June

ECDR_2022.jpgNice, France

The European Conference on Rare Diseases and Orphan Products is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.

Please contact for more information.



Page created: 10/04/2015
Page last updated: 08/01/2021
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases