Ataxia UK Shropshire Support Group

Ataxia UK Shropshire Support Group Supporting Ataxia UK through running both social and fundraising events, spreading the word and knowledge of the Ataxia conditions.

10/04/2026

Updates PTC Therapeutics FA programme
In August 2025, PTC Therapeutics announced that the US drug regulators the FDA did not approve their drug vatiquinone to treat adults and children with Friedreich’s ataxia (FA). The FDA said that substantial evidence of the drug’s effectiveness was not demonstrated, and an additional clinical trial is needed. In February 2026, PTC Therapeutics provided an update via press release. This update explained that in December 2025, as planned, they had a meeting with the FDA to discuss next steps. The FDA indicated to PTC Therapeutics that an additional study is needed to support them resubmitting an NDA (New Drug Application) for vatiquinone, and that this could be an open-label study with a natural history control group. Click the link to read more.
https://www.ataxia.org.uk/research-news/ptc-therapeutics-announces-that-the-fda-has-not-approved-vatiquinone-to-treat-fa-in-adults-and-children/

28/02/2026

Happy ! We are joining forces with Genetic Alliance UK and their 220+ member organisations to call for an equitable future for everyone living with rare conditions. Add your voice to ours! Read and share Genetic Alliance UK’s new report and access their advocacy pack which has practical tips on making your voice heard, today and throughout the year: geneticalliance.org.uk/rdd26

27/02/2026

There are 3.5 million people living with a rare condition in the UK. Everyone with a rare condition deserves fair and equitable care from the NHS, no matter how rare their condition is. Equitable care means addressing individual needs, not treating everyone the same. For Rare Disease Day 2026, will be sharing factsheets and a report to amplify the views of people with rare conditions and shine a light on their lived experiences of inequity.

To raise awareness now, Genetic Alliance UK ‘s Rare Disease Day 2026 advocacy pack shares practical tips on how to use your voice to build an equitable future for everyone in the rare conditions community. http://bit.ly/4rp81yB Coming 28.02.26

26/02/2026

Here's a number that stops you in your tracks: only 1 in 20 rare conditions has an approved treatment.

That's a lot of people living without options. Without something that might make life easier or change the path entirely.

But research is moving. Science is moving. Genomics, AI, newborn screening. There's so much potential if the investment is there.

This week matters. Genetic Alliance UK is taking real stories from the rare community straight to the people who make decisions. Westminster. Holyrood. The Senedd. Minister speeches. An exhibition of what inequity actually means. No filters. No statistics. Just lived experience.


geneticalliance.org.uk/rdd26

24/02/2026

This Saturday, 28 February, is Rare Disease Day.
For many, it starts with waiting. Years of it.

1 in 4 people wait at least three years for a rare condition diagnosis. Three years of appointments that go nowhere. Three years of not knowing. Three years of "it's probably nothing."

This week, the rare community's stories land in Westminster, Holyrood and the Senedd. Genetic Alliance UK is making sure politicians hear them. Minister speeches. Real experiences exhibited. Voices that won't be ignored.

This Rare Disease Day, Ataxia UK stands with everyone still waiting for answers.

geneticalliance.org.uk/rdd26

23/02/2026

This Saturday, 28 February, is Rare Disease Day

There are 3.5 million people in the UK living with a rare condition. That's 1 in 17 people. But when you're in it, it can feel like the loneliest place in the world.

This year Genetic Alliance UK is talking about equity. Not just treating everyone the same, but actually meeting people where they are. Removing the barriers. Making sure rare doesn't mean forgotten.

This week, Ataxia UK aims to highlight the specific challenges our community faces: the slow progression, the search for specialist care, and the need for treatments that can change lives. Join us as we raise our voices for everyone affected by ataxia.


geneticalliance.org.uk/rdd26

14/02/2026
10/02/2026

📊 Rare diseases affect 5% of the global population, that’s over 300 million people. Yet access to diagnosis, care, and treatment still depends on where you live.

Around the world, disparities in healthcare systems, specialist availability, and coverage mean that too many people with a rare disease go without the care they need.

⚖️ Equality would mean offering everyone the same system.
💜 Equity for rare diseases means acknowledging that not everyone starts from the same place, and committing to policies and investments that close the gap.

👉 Learn more about equity: https://go.rarediseaseday.org/equity

03/02/2026

‘Spend a week in a wheelchair, or spend a week blindfolded, and tell me what you make of life. You will probably feel like you are living in a country that has just come out of a war’

Speaking as he is announced as the host of the 2026 Scope Awards, run by disability charity Scope, the presenter and wheelchair basketball Paralympiancalled on non-disabled people to experience what it was like to live with accessibility issues in modern Britain

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