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 www.ejprarediseases.org

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 SYMPOSIUM

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ERA-Net for Research Programmes on Rare Diseases
E-Rare SYMPOSIUM

As a part of its programme the E-Rare Consortium is organizing the special Symposium dedicated to collaboration in rare diseases research. The meeting will take place on the 30 of October 2014 at Casa dell'Aviatore in Rome, Italy.

The event will present a perfect occasion to gather rare diseases stakeholders: funders, researchers, patients’ organizations and regulatory bodies. 

Three symposium sessions will give an overview on how cooperation among funders, scientists and other relevant stakeholders helps in advancing rare diseases research with ultimate benefit to patients.

E-Rare will take this opportunity to present its future plans and activities in the context of the forthcoming "E-Rare-3" action.

The participation in the Symposium is FREE OF CHARGE. However the number of places being limited we encourage future participants to register as soon as possible.

More information about the event, detailed programme and link to registration can be found HERE or on our website www.e-rare.eu

Looking forward to seeing you in Rome!

E-Rare Consortium

 

 

www.e-rare.eu contact@erare.eu

E-Rare 2012 - Created by Toussaint Biger