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.

For more information, check this website.

 

PARADIGM, a collaborative IMI project that aims to make meaningful patient engagement in medicines development a reality. The objective is to develop processes and tools for three key decision-making points: research priority setting, design of clinical trials and early dialogue with regulators and HTA bodies. Share your opinion and experience on patient engagement NOW! Learn more HERE

 

The CORBEL Open Call invites researchers to apply to access technologies and services from more than 20 facilities from 10 different research infrastructures across Europe.
Learn more HERE

 

The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the new vision and goals for 2017-2027. See the publication HERE.

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