EURORDIS Rare Diseases Europe News, September 2015
Action
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 anja.helm@eurordis.org 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.
Feedback
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.
Information
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 heard. Find out more.
For more information on EURORDIS please visit their website: www.eurordis.org
Event
RARE DISEASE DAY 2024 CANADIAN ILLUMINATIONS
On February 29, 2024 these monuments will be lit up in honor of Rare Disease Day. #LightUpForRare Amherst Town Hall in Amherst Nova ScotiaBrampton Clock TowerBritish Columbia LegislatureBritish Columbia PlaceCalgary TowerEdmonton High Level BridgeEdmonton TowerFred A. Lundy bridge in Newmarket, ONMississauga City HallNanaimo BastionNiagara Falls (10:00pm – 10:15pm.) [Live cam link: https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str]Niagara sign in Thorold/Niagara regionOakville Town HallOlympic Cauldron Vancouver Convention CentrePeterborough City HallSales Of Light VancouverScience World Vancouver (FEB 28th)Signal Hill in St. John’s, NLThe Hamilton SignToronto CN TowerToronto Sign in Nathan Phillips SquareVaughan City HallVancouver Convention CentreThe Peace Bridge between Canada and the US Winnipeg Sign Winnipeg Bridge Let us know if there are other Canadian illuminations to add. Tag us on social media @raredisorders (Twitter/X), @raredisorders_cord (Instagram) or email us at info@raredisorders.ca with your photos of the monuments and Rare Disease Day events.
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