EURORDIS updates key website sections

New website section

What We Do

EURORDIS cordially invites its readers to take a look at the newly updated What We Do website section. This revamped and expanded section gives an overview of the many projects, activities and initiatives in which EURORDIS is engaged – all with the common goal of improving conditions for people living with a rare disease. Available in the seven EURORDIS languages, the What We Do section describes EURORDIS activities in the areas of research, information, networking, events, medicines development, EU policies and projects, patient training and empowerment and much, much more.

EU Rare Disease Policy

Other updates include the EU Rare Disease Policy website section. This section provides current information on the many areas of European policy that impact rare diseases and access to treatments, services and care. EURORDIS closely follows all significant policy developments and participates actively to ensure the voice of rare disease patients is present and accounted for in the development and implementation of EU policies that impact people living with a rare disease.

EURORDIS Volunteers

Finally, the EURORDIS Volunteers section has been created to give the full measure of recognition that our many volunteers merit. The EURORDIS Volunteers play a key role in the capacity of EURORDIS to advocate on behalf of people living with a rare disease. This section allows readers to learn more about the EURORDIS volunteers and the roles they play – devoting their time, efforts and talents to help EURORDIS make a true difference in the lives of people with rare diseases. The Charter of the EURORDIS Volunteers - emphasising the core values of EURORDIS - is also available in this section, along with information on how to become a EURORDIS volunteer.

Louise Taylor, Communications and Development Writer, EURORDIS

Page created: 16/07/2014
Page last updated: 25/03/2019
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases