Rare Disease Day 2018

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Hi Everybody

As newly joined members, we received an email Newsletter on the above from Eurordis. The relevant points and links are copied herewith! Apologies that it's a bit late in the day but we only received the email on 22nd. You may, however, have seen a lot of reference to this on social media. Facebook CdLS contacts around the world are certainly joining in and I believe Brazil held a specific event around Rare Disease Day. Not sure about the hashtag #ShowYourRare - grammatically! emoticon_smile

From the Newsletter:

Less than one week until Rare Disease Day 2018!

Rare Disease Day is on 28 February. Now’s the time to get involved in the global movement:

How do you want your health information to be shared?

Take a few minutes to share your opinion on data protection by responding to this Rare Barometer survey. Spread the word – share the survey (this link) with your members, colleagues, friends and family! The survey is available in 23 languages and open to rare disease patients, families and carers around the world.

Register for the European Conference on Rare Diseases & Orphan Products 2018 Vienna!

The European Conference on Rare Diseases & Orphan Products (ECRD) will take place in Vienna from 10 – 12 May. Register before 15 March to receive the early bird rate for EURORDIS members.

RareConnect now available in Czech and Japanese!

RareConnect, the online platform connecting rare disease patients and families around the world, is now available in Czech and Japanese, as well as Croatian, English, French, German, Italian, Portuguese, Russian and Spanish.

Welcome to new members

Welcome to new members of EURORDIS: Stichting Christianson Syndrome Europe (Europe), ASSEDEA (France), Myelitis e.V. (Germany), Peutz-Jeghers-Germany e.V. (Germany), Cornelia de Lange Syndrome World Federation (global), MCT8-AHDS Foundation Inc. (Greece), Cystic Fibrosis Ireland (Ireland), Associazione Per Le Immunodeficienze Primitive Onlus (Italy), Patientenorganisatie Fibreuze Dysplasie (Netherlands), Stichting Hart4Onderzoek (Netherlands), Cambridge Rare Disease Network (UK), The Aarskog Foundation (UK), Amyloidosis Research Consortium UK (UK), Children's Tumor Foundation (US), and Neuromuscular Disease Foundation (US).

 

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