Quality assurance, variant interpretation and data management in the NGS diagnostic era, 12-14 October 2020.

Application deadline: 20 July 2020

More information from the EJP RD here.

 

The European Joint Programme on Rare Diseases (EJP RD) has published the pre-announcement for the Joint Transnational Call 2020. This call is for proposals on "Pre-Clinical Research to Develop Effective Therapies for Rare Diseases".

For more information please visit the EJP RD website: http://www.ejprarediseases.org/index.php/joint-transnational-calls/

Rare Disease Day 2020 will be celebrated this year on Saturday the 29th of February - a fittingly rare date! Coordinated by EURORDIS in partnership with National Alliances, the aim is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Lead-up events throughout the month will be organised by members of the rare disease community including patient organisations, healthcare professionals, researchers, and policymakers across 101 countries.

Rare diseases will affect 1 in 20 people in their lifetime, but their rarity often leads to delays in diagnosis, and means that information and treatment options can be limited. Rare Disease Day is an opportunity to strengthen international cooperation, vital for identifying and classifying these diseases, coordinating research, and providing access to treatment and support for patients, their families, and carers.

For more information, go to the Rare Disease Day 2020 website.

 

The European Rare Disease Models & Mechanisms Network (RDMM-Europe) has been established by Solve-RD – an EU-funded research project. The overall aim is to boost research in rare diseases, discover new disease-causing genes and obtain evidence for pathogenicity through functional validation.

For more information, visit the following website.

E-Rare Newsletter February 2016

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E-Rare Newsletter February 2016

Join us in making the voice of rare diseases heard

29 February 2016 is Rare Disease Day! Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

Since  Rare  Disease  Day  was  first  launched  by  EURORDIS  and  its  Council  of  National Alliances  in  2008, thousands  of events  have  taken place  throughout  the  world  reaching hundreds of thousands of people and resulting in a great deal of media coverage.

On rarediseaseday.org you  can  find  information  about  the  thousands  of  events  happening around the world to build awareness for people living with a rare disease and their families.

We are delighted to share with you the 2016 Rare Disease Day video. The video celebrates the special moments in the lives of people living with a rare disease.

Did you know that E-Rare is cellebrating its 10th anniversary in 2016?

To mark the occasion, E-Rare is going to issue a serie of special documents and movies throughout the year that we will be happy to share with you!
Have a look at the E-Rare 10 years anniversary brochure to discover more on the work and the results of E-Rare from 2006 to 2016.

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

E-Rare 2012 - Created by Toussaint Biger