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.

E-rare Newsletter September 2015

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ERA-Net for Research Programmes on Rare Diseases
E-rare Newsletter September 2015
It is a pleasure to announce the 3rd international congress on research of rare and orphan diseases to be held at the Crowne Plaza Barcelona – Fira Center in Barcelona, Spain, from 9th to 12th March 2016 a superb setting for stimulating learning, exchanges and networking. This congress is jointly organized by E-Rare and the Blackswan Foundation.

The conference sessions will explore issues and cutting-edge technologies that affect many adult and pediatric conditions. The following topics are to be discussed:


• Drug repositioning and personalized medicine
• NGS and undiagnosed rare diseases
• Pathophysiology
• Bringing treatments to the clinic
• Neurological diseases
• Patients and research
For more information on the program :
Full program


Our aim is to promote research on rare and orphan diseases among the general public, industry and policymakers as well as to provide a forum for researchers to meet and pool their knowledge. The underlying objective is to tackle the key issues that need to be addressed if we are to see new and promising therapies and treatments rapidly delivered to patients all around the world.

This will also help to further understanding of other more common diseases and to encourage clear insights from the scientific community in universities and industry.

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.


Early registrations are open until the 31st of October, 2015 : REGISTER NOW

For more informationhttp://www.react-congress.org
Twitter account / Facebook page / LinkedIn

In collaboration with EMA, E-Rare will organize a workshop dedicated to Interactions between EMA and RD researchers on pre-licensing activities. The workshop will take place from 09:00 to 16:00 on the 9 of March 2015 in Barcelona, before the official start of the RE(ACT) meeting. 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
- Face-to-face meetings with EMA officers – session dedicated to researchers that already prepared a draft submission package for OD or protocol assistance.

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]agencerecherche.fr where you will get more instructions.
www.e-rare.eu contact@erare.eu

E-Rare 2012 - Created by Toussaint Biger