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.

2016 RE(ACT) Congress

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ERA-Net for Research Programmes on Rare Diseases
2016 RE(ACT) Congress

The 3rd edition of the RE(ACT) Congress – International Congress on Research of Rare and Orphan Diseases will be held from 9th to 12th March 2016 at the Crowne Plaza Barcelona – Fira Center in Barcelona, Spain. This congress is jointly organized by the Blackswan Foundation and E-Rare.

Preferential prices are available for
-    RE(ACT) community members (Free sign-up for the RE(ACT) Community here): 300€
-    E-Rare Granted researchers: 300€
-    Post-graduate trainees (MSc./PhD Students, research students): 200€
-    Students: 150€
-    Patients organizations: 200€.
You can profit from those special prices until the 18th of January : REGISTER NOW!!

The conference sessions will explore issues and cutting-edge technologies that affect many adult and pediatric conditions on the following topics :
-    Drug repositioning and personalized medicine
-    NGS and undiagnosed rare diseases
-    Pathophysiology
-    Bringing treatments to the clinic
-    Neurological diseases
-    Patients and research
The full program is now available.

The congress will bring together world leaders and young scientists from stem cell, cell biology, gene therapy, human genetic, or therapeutic applications to present state-of-the-art research, to discuss results and to exchange ideas. Moreover, many patients and patient organization, which are committed in research, will be present to share their experience.

Before the official start of the RE(ACT) meeting, E-Rare will organize in collaboration with EMA a workshop dedicated to Interactions between EMA and RD researchers on pre-licensing activities. The workshop will take place from 09:00 to 13:00 on the 9 of March 2015 in Barcelona. It will be open to all researchers and interested stakeholders.

The program will include 4 sessions:
- Pre-licensing activities of EMA with the presentation of relevant EMA services (COMP, SAWP, PDCO, CAT)
- Orphan designation and incentives for researchers including information on how to submit OD and Protocol assistance – how it works
- Lessons learnt from Horizon 2020 success stories on obtaining an OD
In addition, a face-to-face meetings with EMA officers session, dedicated to researchers that already prepared a draft submission package for OD or protocol assistance, will be organised in the afternoon (14:00 to 16:00).
The places for Face-to-face meetings with EMA officers are limited! If you would like to participate, please send an email to juliane.halftermeyer[at] where you will get more instructions.

E-Rare 2012 - Created by Toussaint Biger