Unlocking innovation and access for rare disease patients in Europe

Feb 22, 2021 - Feb 22, 2021, Online

To mark the opening of Rare Disease week, you’re invited to join this high-level policy debate, that will address the future of European collaboration on rare diseases, to reimagine and transform rare disease policy through access, awareness, and innovation.

#Icare4Rare campaign launches to raise awareness ahead of Rare Disease Week 2021

To help raise awareness of rare disease, Reuters Events, Biogen and EU40 have collaborated to launch the #Icare4rare campaign to give prominence to Rare Disease Week 2021



For many of the 30 million people affected by rare disease in the EU, lack of effective treatments and discrepancies in access and diagnosis are still common issues. Strong political will, innovation and further cooperation between countries remain vital to improve outcomes and transform their quality of life.

To help raise awareness of rare disease, Reuters Events, Biogen and EU40 have collaborated to launch the #Icare4rare campaign to give prominence to Rare Disease Week 2021.

Andrea Corazza, Head of Brussels Liaison Office, Public Policy & Government Affairs, Biogen, says: “With this campaign, we want to help putting rare diseases in the political spotlight as there is an urgent need for action to improve care and the quality of lives of people affected by these conditions.”

High-profile individuals taking part in the campaign include MEP Cyrus Engerer, Paola Testori Coggi, former Director General for Health and Consumers of the European Commission, and Noémie Desquiotz-Sunnen, a renowned opera singer living with amyotrophic lateral sclerosis (ALS).

''We need to work together to find solutions to ensure timely and equal access to care for all,'' says MEP Tomislav Sokol, EPP, Croatia.

Watch the video below with Victoria Korzhenevskaya, a consultant in digital transformation and mother of a child with spinal muscular atrophy (SMA). 

The organisers are inviting anyone to join the rare disease community in the #Icare4rare campaign to help raise awareness of the impact of rare diseases. Choose from a selection of images with a statement about rare diseases along with the hashtag #Icare4rare and your personal message about rare diseases.

Statements you can choose from include:

  • “I’m here to raise awareness of the impact of rare diseases”

  • “I support collaboration that helps advance care for rare diseases”

  • “I call on policies that support innovation in rare diseases”

Join in and access your #Icare4rare Toolkit here.

The campaign effort will give prominence to Rare Disease Week, which will take place throughout the month of February and will culminate with their Unlocking innovation and access for rare disease patients in Europe, an online virtual policy event taking place on Monday, 22 February.

 

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Unlocking innovation and access for rare disease patients in Europe

Feb 22, 2021 - Feb 22, 2021, Online

To mark the opening of Rare Disease week, you’re invited to join this high-level policy debate, that will address the future of European collaboration on rare diseases, to reimagine and transform rare disease policy through access, awareness, and innovation.