Rare diseases

Euronews Debates

Innovating for impact: Shaping the future of rare disease treatment

In partnership with Rare Disease Moonshot

Watch the highlights of our live debate in the video above to learn more about what needs to be done to accelerate research on rare diseases and development of treatments. You can also watch the full replay in the video below.

22/11/2024

Health news

EU Court halts Commission’s ban on drug for rare liver disease

In an unusual turn of events, the EU's top court has temporarily suspended the European Commission's decision to revoke the marketing authorisation for a drug used to treat the rare autoimmune liver disease.

06/09/2024

Health news

Gene-editing therapy for rare blood disorder launches in England

Researchers believe the treatment could be a cure for a genetic condition that normally requires patients to get blood transfusions every three to five weeks to survive.

08/08/2024

Health news

Commission’s hospital exemption divides health sector

The inclusion of the hospital exemption for advanced therapies in the new pharmaceutical regulation does not satisfy health organizations and industry amidst accessibility concerns.

03/05/2024

Health news

What is the ‘hospital exemption’, and why does it matter?

A proposed overhaul of EU pharmaceutical rules would impact on the principle of hospital exemption for advance therapies and increase the requirements to ensure uniform implementation.

03/05/2024

Smart Health

Scientists in a race against time to cure rare diseases

In partnership with The European Commission

The relentless quest for answers, the spirit of collaboration, and a steadfast belief in the power of science is pushing medical technology forward to treat the world's rarest diseases.

15/06/2023

Smart Health

Why is the Diagnosis of Rare Diseases So Elusive?

In partnership with The European Commission

In the heart of Romania, nestled within the scientific hub of Craiova, a state-of-the-art laboratory is aiming to unravel the mysteries of rare diseases.

15/06/2023

Health news

Stiff person syndrome: What we know about Celine Dion's rare disorder

The singer has been diagnosed with stiff person syndrome, a rare neurological condition with debilitating symptoms.

08/12/2022

Culture news

From haemophiliacs to inner-humanity: what makes Rankin tick?

The world-famous photographer Rankin speaks to Euronews Culture about his latest project on haemophilia, shooting the Queen, and how he's come to understand human condition.

02/10/2022

Health news

Monkeypox outbreak: Everything you should know about the virus so far

The smallpox-related virus has been mostly affecting men who have sex with men. Authorities are trying to curb its spread without perpetuating stigma.

28/06/2022

Smart Health

Rare diseases in Europe: does data sharing hold the key to progress?

In partnership with The European Commission

Smart Health looks at how the EU's new European Health Data Space aims to improve care and treatment for patients suffering from rare diseases through better data and information sharing.

16/06/2022

Smart Health

Rare diseases: "Recognition of a disability is still complicated"

In partnership with The European Commission

Diagnosis and treatment of rare illnesses can often be complicated due to the condition's very nature. Caroline suffers from a rare genetic disease called Stargardt Syndrome. Smart Health spoke to her about what it's like to live with a rare disease.

16/06/2022

Health news

Justin Bieber: Is Ramsay Hunt syndrome linked to COVID vaccines?

The Canadian pop singer said this rare condition had paralysed half his face. Here’s what you need to know about it.

13/06/2022

Euronews Debates

How can Europe advance rare diseases innovation? | Euronews Debates

In partnership with Biogen

Euronews has gathered a panel of experts, industry leaders and key players in Brussels to address the issue of how rare disease provision can be advanced in the EU.

07/01/2022

Health news

Meet the father who built a home laboratory to save his child’s life

The medicine that could help this man’s son is not available in China, while COVID prevented any possibility of travelling abroad for treatment.

25/11/2021

No Comment

Blind Japanese skateboarder going by feel

Ryusei Ouchi has all the usual trappings of a skateboarder -- the baggy T-shirt, the low-slung trousers, the flat-peak baseball hat. But he also skates with something else: a cane - because he is almost completely blind

26/07/2021

Tech News

UK baby first to receive a game-changing gene therapy on the NHS

Zolgensma is a potentially life-saving therapy for five-month-old baby Arthur Morgan. It’s also one of the world’s most expensive drug.

01/06/2021

World News

Web Summit 2019: AI and drug development mark new era for pharma

Web Summit 2019: AI and drug development mark new era for pharma

07/11/2019

Mongolia

Tourists quarantined in Mongolia after two die of bubonic plague

Tourists and residents at a city in Mongolia have been in quarantine for almost a week after two people died of the bubonic plague after eating what one tourist called a 'woolly, fat hamster,'

07/05/2019

United Kingdom

British baby Charlie Gard has died

28/07/2017