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Eurordis - Rare Disease Europe

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Multimedia

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Podcast episodes

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War with a rare disease: Responding to the invasion of UkraineRare on Air EP 4Listen to the episode
Breaking down barriers: Living with a rare disease and disabilityRare on Air EP 3Listen to the episode
Screening at birth: The key to longer, healthier and better livesRare on Air EP 2Listen to the episode
The Journey of European Reference NetworksRare on Air EP 1Listen to the episode


News & Current Issues

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Vaccination campaigns in Europe (02 March 2021) – François Houÿez
HTx project 2020 – European Project – Introduction
Allison Watson on being an ePAG advocate
Dorica Dan on being an ePAG advocate

Living with a Rare Disease

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Beyond Limits: Rare Men Talking Mental Health
Invisible Manners – a short film on invisible conditions | NPUK
Make NF Visible: Lilly Ann Brooks
Short Bowel Syndrome with Intestinal Failure – Patient Stories: Rosie

Patient Groups

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Living Life to the Fullest – Giving a Face to LGMD
UNDIAGNOSED Wilhelm Foundation
Overexposed
Rare but Real: The Importance of Research for Williams syndrome

EURORDIS Events

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Frédérique Ries, MEP, on the Rare 2030 recommendations
Rare 2030 recommendations in focus
Andrzej Ryś, European Commission, on the Rare 2030 Recommendations
EURORDIS Black Pearl Award 2021 – Dominique Sturz talking about Rare Disease Week 2021

Explaining Rare Diseases

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Tuberous Sclerosis Manifestations – Iceberg
GRIN2B Awareness video
Data quality in Rare Disease Registries
Recommendations to create Rare Disease Registries

Research

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Rare 2030 Foresight Study
RARE 2030 Scenarios
Why are physician-scientists crucial to our future? | Dianna Milewicz | TEDxHouston
Bringing Genomic Medicine into Focus by Eric Green

Rare Disease Day

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Rare Disease Day Nigeria Official Video
Cost Action Aniridia-Net and Aniridia Europe – Rare Disease Day 2021
Rare Disease Day Webinar: How to effectively approach media to boost your Rare Disease Day campaign
Rare Disease Day Webinar: How to illuminate buildings for Rare Disease Day

Oprhan Drugs & Treatments

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European orphan designation
FDA orphan designation
Episode 17 – Future Outlook on the Orphan Drug Market
What does the black triangle mean?

Health Policy

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Marek Plura – #Pledge4RD
ERN Animation clip for patients and health professionals (english subtitles)
European Reference Networks: A Ray of Hope
Story of Paula

Non-English Videos

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HSP- Hereditäre spastische Spinalparalyse
THINC 2020
Зупинимо СМА – English subtitles
Alejandra Pérez del Real CIDP Video

Webinars

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ERN 5-Yr Evaluation through the Patient-Lens Webinar
ePAG Exchange of Good Practices _ VASCERN Flowchart