Paget's Association

04/08/2026

We’re here for you - our Nurse Helpline is for anyone to ask questions concerning Paget’s disease.
You can contact the team here at the Paget’s Association for support, information or simply a listening ear.

We can also put you in touch with others who have similar concerns. In addition, we have an experienced Registered Nurse who manages our Nurse Helpline, which is available during office hours, for support on all aspects of Paget’s disease.

The helpline is available on: +44 (0)161 799 4646

10/07/2026

One of the easiest ways to support Paget's Association is to sign up to easyfundraising.
Shop with 8,000+ online retailers and brands will donate to us for free.
Plus, for a limited time, sign up using the link below and easyfundraising will give us bonus donations.

Help us when you shop with 7,000+ brands. Join now.

17/06/2026

Join one of our Virtual Paget’s Support Groups via Zoom, from wherever you are in the world.

Speak with others who have Paget’s disease, receive information, make new friends, and gain support from each other and the team at the Paget’s Association. Each meeting lasts an hour and take place every two months.

These small, informal get-togethers are currently supporting people in the UK, New Zealand, USA, Canada and Australia.

Next meeting dates and times
Group 1: Monday 22 June 2026 – 3.00 pm (time zone: London)
Group 2: Tuesday 23 June 2026 – 9.00 am (time zone: London)
Group 3: Wednesday 24 June 2026 – 6.00 pm (time zone: London)

Please visit the link below to register your interest! https://paget.org.uk/find-support/talk-to-others/

11/06/2026

We’re here for you - our Nurse Helpline is for anyone to ask questions concerning Paget’s disease.

You can contact the team here at the Paget’s Association for support, information or simply a listening ear. We can also put you in touch with others who have similar concerns. In addition, we have an experienced Registered Nurse who manages our Nurse Helpline, which is available during office hours, for support on all aspects of
Paget’s disease.

Contact the Helpline

Email: [email protected]
Telephone in UK office hours: +44 (0)161 799 4646

05/06/2026

Jim is 71 and from the USA, he was shocked by his diagnosis and struggled to find the support he needed.

In researching the condition, he found few local resources.

‘Paget’s was discovered by chance in my pelvis, sacrum and spine (L5), when I had a bone scan for another reason. I was fortunate not to have experienced pain.’

‘I joined the Paget’s Association and received yet more information. A wonderful resource was/is email correspondence with Specialist Paget’s Nurse Diana Wilkinson, who quickly answered all my questions. I also joined the Zoom sessions with a wonderful Paget’s Support Group.’

For more information on Jim’s story please visit :// https://paget.org.uk/pagets-disease/individual-experiences/jim/

28/05/2026

🧬 Did you know genetics can play a role in Paget’s Disease of Bone?

If a close family member has the condition, your risk may be higher—making awareness and early monitoring especially important.

Understanding your family history can help you take proactive steps and seek advice sooner.

💙 Knowledge is power—learn more and stay informed.

21/05/2026

🧬 What causes Paget’s disease of bone?

It’s still under intensive research, but both genetics and environment can play a role. If it runs in your family, your risk can be higher—children of those affected are around 7x more likely to have a chance of developing it.

💙 Stay informed and aware of your family history.

15/05/2026

📢 Free Paget’s Disease of Bone Information Event

Join us on 11 June 2026 (9:30am–2:30pm) at the Village Hotel, Elstree for a welcoming day of expert talks, practical advice, and the chance to connect with others affected by Paget’s disease.

Hosted by the Paget’s Association, the UK’s only charity dedicated to this condition, the event is open to anyone living with Paget’s disease, as well as their families, carers, and supporters.

Enjoy a relaxed, friendly atmosphere with lunch and refreshments included.

🎟️ Free to attend – reserve your place today via the link!

07/05/2026

We wanted to share this brilliant short film by Culture Vannin about the fascinating evidence of Paget's disease in the skull of someone living in the Isle of Man c.1,000 years ago.

https://www.youtube.com/watch?v=p7QnDz0VujQ&t=11s

(Credit - Culture Vannin)

A short film about the fascinating evidence of Paget's disease in the skull of someone living in the Isle of Man c.1,000 years ago.Dr Marie Weale presents fi...

28/04/2026

🏃‍♂️ The London Marathon 2027 ballot is now OPEN! 🏃‍♀️

Ready to take on one of the world’s most iconic races? Enter the ballot today and make your miles matter by running on behalf of the Paget’s Association 💙

Every step you take helps support those affected by Paget’s disease, funding vital research and raising awareness.

🎽 Challenge yourself.
💙 Change lives.

Sign up, lace up, and let’s make 2027 unforgettable.