CMTUK

09/06/2026

🧬Great news for our global Charcot-Marie-Tooth (CMT) community!
💻 Info Webinar: July 6, 2026 (15:00 CEST)
Details: https://erdera.org/.../erdera-clinical-trial-call-2026.../

Great news for our global Charcot-Marie-Tooth (CMT) community! 🌍🧬

ERDERA has just pre-announced its 2026 Clinical Trial Call (launching July 1st), and it is a significant step toward accelerating rare disease research.

Why this matters for CMT:
🌍 Multinational scale: Pooling data across borders is the most pragmatic way to advance treatments for rare conditions like ours.
🤝 Patient partnership: Every consortium must include a Patient Advocacy Organization, ensuring our community’s needs remain at the core of the research.

ECMTF is ready. We are willing to partner on research proposals that focus on high-impact CMT clinical trials. If you are developing a project that could bring us closer to a solution, we invite you to reach out. Let’s work together to drive the science forward.

📅 Info Webinar: July 6, 2026 (15:00 CEST)
🔗 Details: https://erdera.org/news/erdera-clinical-trial-call-2026-pre-announcement-and-key-dates/

01/06/2026

🚨 Booking for our 2026 CMT Big Kids Weekend opens at 11am TODAY! 🚨

📅 02/10/26 - 05/10/26
📍 Avon Tyrrell, New Forest
👥 18 - 30 year olds

Keep an eye on your emails for the booking form, or drop us a message to get yours 👀

To secure your place, we need:
✅ Your completed booking form
✅ A £50 non-refundable deposit

Places are first come, first served and we sold out in just a couple of weeks last year
We’ve increased capacity for 2026, but if you’d like to join us, please get booked in ASAP!

The total cost for the weekend is a minimum £150 donation, which includes:
🏡 3 nights accommodation
🍽 All food
🎯 All activities
🧗 All equipment needed for the weekend

Please note:
• Payment plans are available on request, just email [email protected]
• The £150 total includes your initial £50 deposit
• The remaining £100 payment and a medical form will be required closer to the event
• Deposits are non-refundable, and refunds for the full cost can only be offered if we are able to fill your place

We can’t wait to see you all for another amazing weekend! 💙

31/05/2026

That’s a wrap on 2026 🎉

A huge THANK YOU to everyone who took part, donated, shared posts, cheered others on, and helped spread awareness for Charcot-Marie-Tooth disease this month!

There’s still time to donate if you’d like to support the campaign 👉 https://cmtunitedkingdom.enthuse.com/pf/mamadim26

Thank you again from all of us at CMTUK & CMT Kids UK!

29/05/2026

🧬 Getting a diagnosis with CMT can take years!
And during that wait, people receive little or no structured support, despite the anxiety, the uncertainty, and the very real physical changes happening in their bodies.

For people with CMT, delays in diagnosis mean delays in:
➡️ accessing rehabilitation
➡️ physiotherapy
➡️ orthotics
➡️ and the right support at the right time.

Conditions that are manageable with the right care become harder to manage without it.

✅ No one should be left waiting, without support, without answers, without a care plan, simply because of where they live.

A Modern Service Framework for neurological conditions would set clear national expectations so that postcode does not determine care.

⚠️ Read the full report - link in the comments.

28/05/2026

Every day, people living with CMT and other neurological conditions face barriers that should not exist.

CMTUK is joining the The Neurological Alliance campaign to call on the Government for better neurological care across the UK.

Neurological conditions affect 1 in 6 people. Nearly half of those living with a neurological condition do not feel supported by the care that should be there for them.

At CMTUK , we see this every day:
➡️ The long waits for diagnosis
➡️ The struggle to access specialist care
➡️ The fatigue, the pain, the anxiety and the exhaustion of having to fight for support that should simply be there

You can support by:
✅ Sharing our posts
✅ Reading the campaign report (link below)
✅ Sharing this with people who need to hear it

⚠️ Let's make neurological conditions impossible to ignore ⚠️

27/05/2026

This year, we didn't just come together to learn and connect, but to mark forty years of supporting people living with Charcot-Marie-Tooth (CMT) disease across the UK.

For many attendees, this is one of the rare chances to be in a room full of people who truly understand what it means to live with CMT.

This year also gave us a moment to look back. What started as a small support network has grown into something much bigger, but the goal has always stayed the same — to make sure that no one has to face CMT alone.

A heartfelt thank you to everyone who made the CMTUK Conference 2026 possible, including our speakers, sponsors, volunteers, and every single person who made the journey to Hilton Reading.

Your support is what keeps this community strong! 💙

Read the full recap on the blog 👇
cmt.org.uk/cmtuk-conference-2026-40-years-turning-knowledge-into-support/

21/05/2026

🧬 Still early days, but a meaningful step forward for the millions of people worldwide living with CMT.

Read the full article from the CMT Research Foundation 👇

Read "CMT1A Patients Dosed in Korean Phase 2a Drug Trial", and other CMT Research Updates articles from the CMT Research Foundation.

19/05/2026

Come and join us on Saturday 6th June at the amazing 🚀 Magna Science Adventure Centre for a day packed with fun, science and good company. Children, young adults, parents, grandparents, big kids, siblings — everyone is welcome!

🚩 It is one of those days where CMT is in the background and the whole point is just being together. Families get to meet others who truly get it, kids get to have a brilliant time with children who understand their world, and everyone gets to just enjoy the day.

Our trustees Vicky, Sophie and Sam will be joining us too. They have worked so hard behind the scenes to make this happen and we are so grateful for everything they do. 🩵

Find out more and book your place here: cmt.org.uk/cmt-kids-family-day-trip-to-the-magna-science-adventure-centre

18/05/2026

Please nominate CMTUK and help give something back to a charity that is here for the CMT community every single day.

Share this with anyone who might want to show their support. Every single nomination counts!

👉 tinyurl.com/NominateCMTUK2026
⏰ Nominations close midnight, Sunday 24 May.

As the UK's charity for people living with Charcot-Marie-Tooth, we know better than most how much the right support can mean.
Together we are stronger 💙

16/05/2026

Did you know that each place on our CMT Kids & Big Kids activity weekends costs around £500?

These weekends give children and young people living with CMT the chance to build confidence, make friendships and try new activities in a supportive environment - creating memories that really do last a lifetime!

We massively subsidise these costs for participants and their families to help make the weekends as accessible as possible, which is why fundraising through is so important 🙌

Every donation helps us continue providing these incredible experiences!

There’s still time to get involved, move your mile, and support the campaign 👣

Donate here 👉 https://cmtunitedkingdom.enthuse.com/pf/mamadim26