The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD) which will take place at the Istituto Superiore di Sanità, Rome, Italy. The first module “Rare Disease Registries” starts on September 23 till September 25, 2019. The second module “FAIRification of data”, starts on September 26 till September 27, 2019.

Onlne registration deadline is June 20th, 2019.

Find more information on the following link.

North American edition of the RE(ACT) Congress 2019 to be held at the Sheraton Center Toronto Hotel in Toronto, Canada, from May 8-11 2019. This 5th edition, the first to be held in North America will include sessions on clinical trials and registries, generalizable rare disease therapeutic approaches, gene editing, cell & gene therapy, stem cells, genetically modified cell therapies/clinical applications of gene therapies indigenous populations and rare diseases, and patient-focused drug development. REGISTER NOW! 

The European Joint Programme on Rare Diseases (EJP RD), which is the successor of E-Rare launches the Joint Transnational Call 2019. The call will  open officially in December. This year projects should focus on accelerated diagnosis and/or exploration of disease progression and mechanisms of rare diseases. More info under www.ejprarediseases.org

News & Media

Dear Colleagues, As you may have heard, the new General Data Protection Regulation (GDPR) comes into effect May 25, 2018. Your privacy comes first!   As you are part of E-Rare community and has expressed interest in our calls, conferences and rare diseases related news OR registered into our "...
The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the new vision and goals for 2017-2027. IRDiRC, officially launched in 2011, was originally conceived with two main goals: to contribute to the development of 200 new therapies and the means to diagnose most rare...
Orphanet (www.orpha.net) is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. Orphanet aims to provide high-quality information on rare diseases, and ensure equal access to knowledge for all...
ECRIN has launched a call for pilot clinical studies to receive trial management support from the Paediatric Clinical Research Infrastructure Network (PedCRIN) project. The goal is to support the multinational extension of paediatric studies on medicinal products having already secured funding in...
In December 2015 E-rare launched the eigth E-Rare joint call (JTC 2016) for funding multilateral research projects on rare diseases on “Clinical research for new therapeutic uses of already existing molecules (repurposing) in rare diseases”. Fifteen countries joined this call: Austria, Belgium,...
At the occasion of the 10th anniversary of E-Rare, we are glad to share with you short movies on research projects funded by E-Rare. In this video, Dr Raul Estevez explain the project CLC & MLC, ‘CLC chloride channels and Megalencephalic leukoencephalopathy: molecular mechanisms and...
At the occasion of the 10th anniversary of E-Rare, we are glad to share with you short movies on research projects funded by E-Rare. In this video, Dr Marjon Pasmooij explain the project Splice-EB, ‘Splicing therapies for Dystrophic Epidermolysis Bullosa’.
E-Rare has already ten years! View the video we made at this occassion, learn more about E-Rare and see what rare diseases stakeholders think about us.    
The ninth E-Rare joint call for funding multilateral research projects on rare diseases (JTC2017) will be open on the December 5th 2016. The following 17 countries intend to participate in this call: Austria, Belgium, Canada (including Quebec), Finland, France, Germany, Greece, Hungary, Israel,...
Do you know an inspiring individual making a difference for the rare disease community? Nominate them for a EURORDIS Award!The EURORDIS Awards acknowledge the outstanding contributions of patient advocacy groups, volunteers, scientists, companies, media, and policy makers toward reducing the impact...

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E-Rare 2012 - Created by Toussaint Biger