Kennedy's Disease UK

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Kennedy's Disease UK (KD-UK) is the only UK based charity for Kennedy’s Disease and we are a non profit organisation run by volunteers and sufferers.

Raising funds for and awareness of Kennedy's Disease
www.kennedysdiseaseuk.com

01/11/2026

It's the 1st of November, which means Movember starts today.
Kennedy's Disease is a rare inherited condition that affects men, so men's health matters to our community. This month, check in with the men in your life, look out for each other and keep talking.

Find out more about Kennedy's Disease at kd-uk.com.

We realise that more is needed to help raise awareness of the disease. We want to make sure that people out there hear about Kennedy’s Disease and the effect it has on sufferers, carers, family and friends. There are two centres carrying out vital research in the UK and we hope that our efforts wi...

30/10/2026

Patient Review Opportunity – Kennedy's Disease (SBMA)

Nclusiv is looking for three people living with Kennedy's Disease to take part in a paid Patient and Public Involvement (PPI) review for an upcoming clinical research study.

What's involved?

You would be asked to review patient information documents for a clinical trial involving adult males with genetically confirmed SBMA and symptomatic muscle weakness.

The documents include:

Main Patient Information Sheet/Informed Consent Form

Pregnant Partner Information Sheet/Informed Consent Form

Optional Future Research Information Sheet/Informed Consent Form

Your role would be to read the information from a patient perspective and provide feedback on how clear and understandable it is, whether anything could be explained more simply, and whether there are any questions or concerns a potential participant might have.

The review is completed remotely, in your own time, and we provide a feedback form and guidance to help you.

Payment: There is an honorarium in appreciation of your time and contribution.

Who can take part?

We are particularly keen to hear from UK-based adults living with Kennedy's Disease (SBMA). No previous research or reviewing experience is necessary.

Interested in helping?

Please email [email protected] to express your interest or ask any questions.

You can also find out more about Nclusiv at www.nclusiv.co.uk.

28/10/2026

Thank you for being part of the KD community. 🌟

Every message, every donation, every challenge taken on and every share helps us raise awareness and fund vital research. Everything really is better when we're together.

25/10/2026

Be prepared, for free.

Our QR coded wristband helps doctors and emergency staff understand Kennedy's Disease quickly if you ever need medical help. Sign up for yours today (link in bio). 💙

https://docs.google.com/forms/d/e/1FAIpQLSe4xA20rbEiMXiBs8D4AfWQkBVPrFzh8k0qmwGQcN_e_Yo2Kw/viewform

Please share with anyone who might benefit.

22/10/2026

A gift in your will is a gift of hope. 💙

Leaving a legacy to KDUK helps fund vital research and support for everyone affected by Kennedy's Disease, now and for generations to come. Every gift, large or small, helps us work towards a future without KD.

19/10/2026

Peace of mind, for free. 🕊️

We're pleased to offer a free will writing service through our website, in partnership with FreeWills. It's quick and easy, and solicitor-checked. It's a simple way to protect your family and make sure your wishes are followed.

13/10/2026

KDUK is pleased to announce that the 2027 Patient and Scientific Conference will take place November 7-9, 2027 at Caesars Palace in Las Vegas, Nevada.

The three-day conference will combine patient-related talks with a scientific conference for the Kennedy’s Disease (SBMA) research community. An Event You Won’t Want to Miss!

The conference will include presentations for patients, carriers, and family members, along with important updates on clinical trials, plus the latest trends in laboratory research and development of potential therapies. It’s a unique opportunity for patients, families, doctors and researchers to meet, learn and share information.

We can’t wait to share more details with you soon. For now, save the date for three information packed days!

10/10/2026

Focus on the good. 🌟

Research is moving, our community is growing, and no one has to face Kennedy's Disease alone. Thank you to everyone who supports KDUK. You make the good happen.

07/10/2026

AnnJi One Step Closer to a Phase 3 Trial

Following its successful Phase 2 trial AnnJi Pharmaceutical is now one step closer to launching its Phase 3 trial in the United States. Although it is early days, fingers are firmly crossed at KD-UK that a meaningful treatment for Kennedy’s Disease may be within reach.

https://www.ajpharm.com/news/index/2/234?lang=en&fbclid=IwY2xjawUu_FdleHRuA2FlbQIxMQBwZG9mBGJyaWQRMHVBTTVYYUhvMmc1dmpieHpzcnRjBmFwcF9pZAEwAAEeYSRa6nignQEeesUxn59hWopNeb8MkWC8THZbeDH5bhrCUeY3m6JVXWf7DJk_aem_ghZqMyUf_MZHKDpyKZZ2LQ

AnnJi Pharmaceutical Co., Ltd. is a clinical-stage drug development company focused on the translational research, preclinical studies, and early clinical validation of innovative small molecules (NCEs). Our pipeline targets therapeutic areas with high unmet medical needs, particularly in neurology,...

01/10/2026

As we welcome October, we’re looking forward to another month of raising awareness, supporting our Kennedy’s Disease community and sharing the latest news, research and stories with you.

Here’s to a wonderful autumn season - together! 🍂🤝

Address

Dorchester
DT13GY

Telephone

+447970878130

Website

http://kennedysdiseaseuk.com/

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