Skip to content

Eurordis - Rare Disease Europe

Sobre nosotros

Actividades

Nuestra red

Advocacy

Áreas prioritarias

Cross-cutting areas

Sobre enfermedades raras

Acerca de los tratamientos para enfermedades raras

Encuentra apoyo

Con EURORDIS

Con nuestros programas e iniciativas

Con nuestros eventos

Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors
Noticias
Eventos
Miembros
Recursos
Contacta con nosotros
Opciones de accesibilidad
Language
Donate

Multimedia

Filter Multimedia

Use controls below to filter your results.

Podcast episodes

See all
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

See all
Vaccination campaigns in Europe (02 March 2021) – François Houÿez
HTx project 2020 – European Project – Introduction
Lex van der Heijden on being an ePAG advocate
Allison Watson on being an ePAG advocate

Living with a Rare Disease

See all
Beyond Limits: Rare Men Talking Mental Health
Invisible Manners – a short film on invisible conditions | NPUK
Make NF Visible: Lilly Ann Brooks
SANDO illness from the Inside out

Patient Groups

See all
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

See all
Frédérique Ries, MEP, on the Rare 2030 recommendations
Rare 2030 recommendations in focus
Andrzej Ryś, European Commission, on the Rare 2030 Recommendations
EURORDIS Policy Maker Award 2021 – Kateřina Konečná

Explaining Rare Diseases

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

Research

See all
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

See all
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

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

Health Policy

See all
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

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

Webinars

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