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 Newsletter December 2013

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ERA-Net for Research Programmes on Rare Diseases
E-Rare Newsletter December 2013
On the 5th of December 2013 E-Rare officialy opened its 6th Joint Transnational Call for Research Projects on Rare Diseases (JTC 2014). 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. 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).
The research projects have to focus on the pre-clinical development of therapeutic approaches in suitable existing animal or cell models.
Therapeutic approaches can include (but are not limited to): cell based therapy; gene therapy and pharmacological therapy.
Rare infectious diseases, rare cancers and rare advers drug events in treatment of common diseases are excluded from the scope of the call.
The deadline for pre-proposal submission is 30 January 2014.
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.
On the demand of the research community we created a new, optimised module that will help you to find and contact potential collaborators.
How does it work?
A short registration form allows you to create your profile. Only few essential details must be indicated: your name, country, research area, etc. Once your profile is created it will be added to our database of rare diseases researchers. You can visualize and modify it.
How do I find a collaborator?
By clicking on "Looking for collaborations" button you will be redirected to the search engine. You can search either via a simple search or refine your search by indicating for example: country, research area or rare disease. A list of users will appear and you will be able to consult the profiles of selected users. You will have the possibility to contact each user via a contact form embedded in the profile.
How do I know that my personal data is safe?
The data of your profile is kept on a secure server. Your e-mail address will not appear on your profile. It will serve to communicate with the administrator and to create the contact form via which other users can communicate with you.
Why it is important to subscribe?
Only by creating your profile you will have access to other users but also give them the chance to find YOU!
We created a tool for the research community but the database of users must be created by yourselves. The more researchers will subscribe the more chances you will have to find your potential collaborators. Don't hesitate and register NOW!

E-Rare 2012 - Created by Toussaint Biger