EURORDIS Rare Diseases Europe News, September 2015


Second member webinar on European Reference Networks – 13 October

The second EURORDIS member webinar on European Reference Networks will take place on 13 October at 16:00 – 17:30 French time. This webinar is being held shortly after the European Conference on European Reference Networks.
Yann Le Cam, EURORDIS Chief Executive Officer, and Matt Johnson, Healthcare and Research Director, will discuss new information regarding the upcoming call for applications from networks of Centres of Expertise and healthcare providers wanting to become ERNs. This will be followed by a live Q&A during which you can ask questions.
You do not need to register. Please go to this link on the 13 October at 16:00 and simply log in with your name.
Please email if you have any questions regarding the webinar or would like to express your interest in participating.
You can also watch the first webinar that took place in July 2015.

The EURORDIS Photo Contest 2015

The EURORDIS Photo Contest 2015 is now open for submissions! Submit your photos to be in with a chance of winning an ipad. You could win in one of three categories: the Public Vote, chosen by the public, the Expert’s Choice, chosen by professional fashion photographer Rick Guidotti or enter via Instagram to try to win the first ever EURORDIS Photo Contest Instagram Prize, as chosen by National Geographic photographer Amy Vitale. Follow the contest on social media with #RareButReal2015.


EURORDIS Awards 2016: call for nominations now open

EURORDIS is delighted to announce the fifth edition of the EURORDIS Awards recognising outstanding accomplishments and leading work in the field of rare diseases.
Nominate an individual or organisation for an award. The deadline for nominations is 31 October, 2015.
Categories are: European Rare Disease Leadership Award, Policy Maker Award, EURORDIS Volunteer Award, Scientific Award, Patient Organisation Award, Company Award, Media Award and Lifetime Achievement Award. Read the nomination criteria.


New project – improving patient access to medicines through ADAPT SMART

EURORDIS is a partner in the recently launched ADAPT SMART project, aimed at improving patient access to medicines through MAPPS (Medicines Adaptive Pathways to Patients). Find out more.

Rare Disease Day 2016 theme and slogan

EURORDIS is pleased to announce that the 2016 Rare Disease Day theme is Patient Voice and the slogan Join us in making the voice of rare diseases heardFind out more.

For more information on EURORDIS please visit their website: