patients

Solve-RD Public Symposium: The Impact of Solve-RD on Research & Care of Rare Disease Patients

NewsPar Onakoy Tanguy 22 mars 2023

Solve-RD, a research project funded by the European Commission for five years (2018-2022), having the ambitious goals set out by the International Rare Diseases Research Consortium (IRDiRC) to deliver diagnostic tests for most rare diseases by 2020, invites all its partners to attend the Solve-RD Final Meeting 2023 in Prague (Czech Republic) or online. The meeting will take place on 24-26 April 2023 and the registration deadline for…

General Assembly of TEDDY Network

EJP RD News, NewsPar Ngangta Mbaidoum 6 juillet 2022

The General Assembly of TEDDY Network will be held online, within a hearing at the Council of Europe this July 7th from 9.30 to 14.00 CEST. TEDDY Network will present some activities (part of which were developed within EJPRD) to be considered as good practices promoting the empowerment of children and facilitating their participation in…

Training for patient representatives and advocates on leadership and communication skills

EJP RD News, NewsPar Ngangta Mbaidoum 3 mars 2022

As part of the training activities proposed by EJP RD, an international course entitled « Training for patient representatives and advocates on leadership and communication skills » is a 2-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, open to patient representatives involved in the 24 European Reference Networks (ERNs), including members of the European Patients…

UN General Assembly formally adopts Resolution on Persons Living with a Rare Disease and their Families

NewsPar Ngangta Mbaidoum 17 décembre 2021

Following a sustained campaign by rare disease patient advocacy organisations such as Rare Diseases International and with the support of several Member States, the United Nations (UN) General Assembly has formally adopted on December 16th 2021 with the consensus of all 193 UN Member States the UN Resolution on Addressing the Challenges of Persons Living with a Rare…

EURORDIS Photo Award 2022

NewsPar Onakoy Tanguy 19 novembre 2021

The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. The contest is open to all nationalities, ages, and diseases. Every year, hundreds of people from all around the world submit their photos, each…

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Solve-RD Public Symposium: The Impact of Solve-RD on Research & Care of Rare Disease Patients

General Assembly of TEDDY Network

Training for patient representatives and advocates on leadership and communication skills

UN General Assembly formally adopts Resolution on Persons Living with a Rare Disease and their Families

EURORDIS Photo Award 2022

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