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

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.

E-Rare new year Essentials!

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ERA-Net for Research Programmes on Rare Diseases
E-Rare new year Essentials!




The 6th Joint Transnational Call for Research Projects on Rare Diseases (JTC 2014) opened on the 5th of December 2013. The following 16 countries participate in this call: Austria, Belgium (Flanders), Canada (including Québec), France, Germany, Hungary, Israel, Italy, Latvia, Poland, Portugal, Romania, Spain, Switzerland, The Netherlands and Turkey. This year the call is specifically dedicated to development of innovative therapeutic approaches for rare diseases.
If you still have not read or downloaded all documents necessary for your application you will find them on our website
If you want to submit your project the electronic submission system is now OPEN: 
Please remember that in order to submit your project you must first register (using the same link as above).
The submission system will close on the 30 of January at 20:00 (UTC).
Each funding agency applies its own eligibility criteria that are detailed in the Guidelines for Applicants document available on our website.
Please note that ITALIAN teams must also fill an additional "Eligibility form"!
A partner is considered as "non-eligible" to receive funding if it comes from a country that does not participate in the current call (please see the list of participating countries above) OR if it comes from a country that participates in the call but does not fulfill its national eligibility criteria.
Any "non-eligible" partner can participate in the project at the following conditions:
  • Non-eligible partner must secure its own funding
  • Non-eligible partner must not be a coordinator of the project
  • 50% of research groups in the project must be eligible
  • A minumum of 3 eligible groups from 3 different countries must participate in the project.
Maximize your chance to find partners for your project!
The "Looking for collaborations" module is open on our website. It allows you to create your profile and find potential collaborators.

Remember that even if you do not look for partners now, being a part of our database guarantees the visibility of your profile to other researchers and opens new possibilities for the future.

The second edition of RE(ACT) International Congress on Research of Rare Diseases will take place in Basel, Switzerland from 5 to 8 of March 2014.

In its first edition, the RE(ACT) Congress brought together almost 300 people to discuss research into rare diseases and the development of active substances to treat them. What made the congress unique was the interdisciplinary collaboration. Scientists from different disciplines – stem cell researchers, geneticists, biochemists, clinicians and pharmacists – exchanged information with patient organizations.
The main goals of the Congress are:

  • Promote research on rare and orphan diseases among the general public, industry and policy makers
  • Bring together researchers and their knowledge
  • Help in the understanding of other more common diseases
  • Encourage clear insights positions identifiable from the scientific community in university and industry.


You still have time to register at

E-Rare 2012 - Created by Toussaint Biger