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eNews: 08 October 2014
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The Voice of Rare Disease Patients in Europe
Patients to contribute to Committee for Medicinal Products for Human Use discussions on benefit-risk in marketing authorisation evaluations

Patients are active and vital participants in many of the different committees and meetings of the European Medicines Agency (EMA), adding value to decision processes. Now, patients cross a new frontier by participating in discussions with marketing authorisation applicants when invited by the Committee for Medicinal Products for Human Use (CHMP) as part of an initial one-year pilot project.

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Patients are invited to contribute to Committee for Medicinal Products for Human Use discussions on benefit-risk in marketing authorisation evaluations
RARECONNECT
Online Communities for Rare Disease Patients
RareConnect with Stargardt disease groups create online community for this inherited juvenile macular degeneration
RareConnect
PATIENTS, ORGANISATIONS, SERVICES
Read about living with a rare disease and the services available
EB House in Austria improves quality of life for people with Epidermolysis Bullosa via outpatient, research and academy units
EURORDIS TV
Compelling videos from the rare disease community on EURORDIS TV
In a time when beauty is defined by supermodels, success defined by wealth, and fame by how many followers you have on social media, rare disease patient Lizzie Velasquez asks: how do you define yourself?
RARE DISEASE DAY 2015
Annual International awareness-raising campaign on Rare Diseases
Find great tips for communicating about Rare Disease Day in the informative webinar: The Spirit of Rare Disease Day
Rare Disease Day
NATIONAL PLANS
Towards comprehensive National Plans and Strategies for Rare Diseases across Europe
Spanish EUROPLAN Conference: 20-21 November, Madrid
GET INVOLVED
Information of interest for patients and their representatives
You still have time to nominate the person, organisation or company meriting a EURORDIS Award 2015!
Get involved with hands raised
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EVENTS
Upcoming international rare disease events
ICORD 2014 Annual Meeting: Societal Value of Prevention, Diagnosis & Treatment of Rare Diseases - 7-9 October, Ede, Netherlands
International rare disease events
MEMBERS' CORNER
News and events from our members
French Angelman Syndrome Association (AFSA) National Meeting: 18-19 October, Paris
MEMBERS' CORNER
ORPHAN DRUGS
Find out the latest orphan drug designations and marketing authorisations
Orphan Drugs

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This publication (or activity) has been funded with support from the European Union's Health Programme. This material only reflects the views of the author, and funders cannot be held responsible for any use which may be made of the information contained herein.
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