Pulmonary Hypertension Unit

European Year of Rare Diseases 2019

PHA Europe are members of the EURORDIS Committee in charge of organizing the “European Year of Rare Diseaseas 2019”. It is a great honour to be part of this but we need you help to make it happen!

Each year since 1983, the EU has chosen a specific topic for the European Year in order to encourage debate and dialogue within and between European countries.

By acting together, we aim to make 2019 the European Year for Rare Diseases!

Following the enthusiastic adoption of the official Call for a European Year for Rare Diseases (EYRD2019) at the EURORDIS General Assembly in May 2013, we are preparing to launch the campaign.

Why 2019?

2019 is an important year for the European rare disease movement. It marks the twenty-year anniversary of the adoption of the EU Regulation on Orphan Medicinal Products as well as the ten-year anniversary of the Council Recommendation on rare diseases. What better way to celebrate these major milestones than with a European Year for Rare Diseases!

We invite you to generate support from members and friends of the rare disease community for the launch of this campaign, including your own organisation members, national policy makers, research institutions, academics, scientists, healthcare professionals, centres of expertise, pharmaceutical and biotech companies, medical device manufacturers, investors, media, and the general public at large.

In order to help us build the necessary momentum, we have developed information and tools to help you create energy and excitement around the movement. We urge you to disseminate the following information tools and documents via your websites and social media channels

  • Official Call for a European Year for Rare Diseases (in English, French, German, Spanish,   Italian,   Portuguese
  • Questions & Answers document (English only)
  • Campaign logo
  • Information flyer (English only
  • Template letter to be personalised by your association and sent to your national policy makers (English only)

 

INFORMATION WEBINAR

 

EURORDIS is organising a Webinar to inform and answer questions about the campaign. Everybody is invited to join and we ask for your participation to help spread the word of our Webinar to your own members and networks.

 

DATE Thursday, 23 October
TIME (Central European Time): 15.00 – 16.00 (30 mins + Q&A)
TITLE: European Year for Rare Diseases 2019: Why and how to get involved?
LANGUAGE: English
HOST: Representative from Burson Marsteller
PRESENTERS: –  Sharon Ashton, Senior Event Manager, EURORDIS- Flaminia Macchia, Director for European Public Affairs, EURORDIS-  Mirjam Mann, Director, ACHSE, German National Alliance for Chronic

Rare Diseases

LEARNING OUTCOMES: Attend this interactive webinar to learn:- The principle objectives of the campaign

– The value of the campaign at national level

– The value of the campaign at an EU level

– How to get involved

 

CENTRAL WEBPAGE TO EXPRESS SUPPORT

A dedicated page on the EURORDIS website is available in English, French, German, Spanish, Italian and Portuguese for the rare disease community and our friends to publicly express their support for the EYRD2019. The page allows people to sign-up to join the campaign in favour of an EYRD2019.

 

The EYRD2019 campaign will also feature as the lead story in the EURORDIS eNews on 1 October 2014.

 

http://www.eurordis.org/eyrd2019