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 Open Call Menu link.

28 February 2019 will be the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities. The theme for Rare Disease Day 2019 is 'Bridging health and social care'.

For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

More information, HERE.

News & Media

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ERA-Net for Research Programmes on Rare Diseases
E-Rare Newsletter December 2014
On the 15th of December 2014 the following 17 countries:  Austria, Belgium, Canada (including Québec), France, Germany, Greece, Hungary, Israel, Italy, Latvia, Poland, Portugal, Romania, Spain, Switzerland, The Netherlands and Turkey opened the seventh E-Rare joint call (JTC 2015) for funding multilateral research projects on rare diseases together with the European Commission (EC) under the ERA-Net E-Rare co-fund mechanism.

The aim of the call is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with a clear translational research approach. Projects shall involve a group of rare diseases or a single rare disease following the European definition (a seriously debilitating and/or life-threatening disease affecting not more than 5 in 10.000 people).

ARE EXCLUDED: (1) Rare infectious diseases, (2) rare cancers, (3) rare advers drug events in treatment of common diseases as well as (4) rare neurodegenerative diseases, which are within the focus of the Joint Programming Initiative on Neurodegenerative Disease Research (JPND; These concern: Alzheimer's disease (AD) and other dementias; Parkinson's disease (PD) and PD-related disorders; Prion disease; Motor neuron diseases (MND); Huntington's disease (HD); Spinal muscular atrophy (SMA) and dominant forms of Spinocerebellar ataxia (SCA). Intersted research should refer to JPND calls.
The deadline for pre-proposal submission is 18 of February 2015.
For more information, call text, guidelines, national contact points and all specific documents click HERE or visit our website
We strongly encourage all future applicants to download and carefully read the documentation of the call. It is important to note that national agencies may apply their national, specific rules (may change every year) that must be fulfilled by the applicant.


We created for you an Interactive FAQ where applicants can find information and ask questions. The already existing base of Questions and Answers contains responses collected during previous E-Rare calls and can be consulted via the FAQ access from the homepage or in the Open Call section. However, we found useful to open the possibility to ask questions at any moment.

If you HAVE A QUESTION regarding E-Rare calls connect to and use the Interactive FAQ form (available from the homepage) to ask your question. All questions and answers will be automatically integrated to the FAQ. The answers will be available on line within 24 h after the question was asked.

Please note that the questions related to the national eligibility and issues will not be answered through the FAQ. We invite you to contact your national contact points.


"Looking for collaborations" module is also available directly from the E-Rare homepage. More than 300 researchers already registred and many new profiles are created every day. This module allows to search for collaborators using medical domain, rare disease(s), country or simple keyword search engine. Moreover, registered member can contact directly other users for future collaborations.

E-Rare strongly encourages applicants to register to the "Looking for collaborations" platform.

The more of you will register the more exhausite database of rare diseases researchers will be available for your future cooperations!!!

In December 2013 E-Rare launched its 6th Joint Call For European Research Projects On Rare Diseases (JTC 2014) specifically dedicated to the development of innovative therapeutic approaches. Sixteen countries joined this call: Austria, Belgium (Flanders), Canada (including Québec), France, Germany, Hungary, Israel, Italy, Poland, Portugal, Romania, Spain, Switzerland, The Netherlands and Turkey.

The research projects had to focus on the pre-clinical development of therapeutic approaches in suitable existing animal or cell models. Therapeutic approaches included (but were not limited to): cell based therapy; gene therapy and pharmacological therapy.

The process included a two-step submission and evaluation procedure.

In the first step a total of 141 eligible pre-proposals were submitted. After careful examination by the Scientific Evaluation Committee (SEC), 40 pre-proposals were selected for full submission. Each of the full proposals was then evaluated by at least two additional external experts whose reviews were sent to project coordinators in order to give them the opportunity of studying the assessments and commenting on experts' arguments and evaluations. Both inputs were taken into account in a second SEC meeting.

Following the second SEC evaluation and ranking of the best projects,14 consortia with a foreseen budget of about 10 Mio € were selected for funding.

More information about the selected projects and involved research teams can be found HERE or on our website.

E-Rare 2012 - Created by Toussaint Biger