Amyloidosis UK

01/10/2026

Proudly wearing their Team Tett Amyloidosis UK shirts, Phil & Martin officially completed the Compton Half Marathon on Sunday, finishing in the top 120 out of nearly 300 runners! All to spread vital awareness of ❤️

Through their many fundraising initiatives over the whole year, Team Tett have now raised more than £5,500 for our charity and they’re still going strong 💪

Follow & support Team Tett on https://www.justgiving.com/page/john-tett

28/09/2026

One last post to celebrate our recent Patient Day in Glasgow with some more photos 🥰

If you were there and didn’t get a chance to fill in our feedback form on the day, we’d be hugely grateful if you could fill in our quick online survey version here: https://www.surveymonkey.com/r/Y6GRDPZ

Our next Patient Day will take place in Liverpool on November 15, places are available so please book here if you’re interested (it is free): https://www.eventbrite.co.uk/e/amyloidosis-uk-patient-day-liverpool-tickets-1994312423143

25/09/2026

Good afternoon everyone! We just wanted to make you aware of an upcoming Patients Association webinar, covering their work on shared decision-making and consent, and supporting conversations around bladder and bowel care. This webinar is completely free to attend:

Making decisions together: Supporting conversations about bladder and bowel products and services (delivered in partnership with Coloplast)

Wednesday 14th October, 10-11am

There is concern that decisions around care and products for patients with bladder and bowel intimate care needs are being made on the basis of cost to the NHS, at the expense of patients receiving the right care and treatment for their needs. Working in partnership with patients, the Patients Association and Coloplast have developed a number of resources that are designed to support patients understand their rights and get access to the products and services they need.

At this free webinar, you'll hear about patients' experiences of accessing bladder and bowel products and services, including some of the challenges people face in getting care that meets their individual needs.

Speakers:

Chair - Rachel Power, Chief Executive of the Patients Association
Wendy Osborne, Clinical Advisor and Clinical Nurse Specialist at Coloplast
Brian Fretwell, Chair of the Urostomy Association, and patient
Jacq Emkes, patient advocate
Libby Herbert, Chief Executive of Colostomy UK.

Sign up at: www.patients-association.org.uk/Event/making-decisions-together-supporting-conversations-about-bladder-and-bowel-products-and-services-coloplast-webinar

24/09/2026

Team Tett are still going strong!

John Tett’s fundraiser for Amyloidosis UK has already raised more than £4,500 and John’s still walking towards his new milestone of 1000km in 6 months having already surpassed 600km in 3 months. The whole family are still getting involved with their own events too.

Next Up: The Brewood 10k & Compton Half Marathon! The journey continues and this time John’s son Phil is stepping up to take on the miles. On September 20, Phil and his brother-in-law, Martin Bowden, tackled the Brewood 10k together. This Sunday (September 27), they’re taking on the Compton Half Marathon.

Team Tett are keeping the momentum alive to spread vital awareness of amyloidosis. A huge thank you to the whole family for their continued support—wish them luck for Sunday! ❤️

Follow their story on their JustGiving fundraiser page: https://www.justgiving.com/page/john-tett

24/09/2026

Thanks so much to everyone who came to our Patient Day in Glasgow on Sunday! We’ve had so much lovely feedback and by all accounts it was a resounding success.

The day was all about bringing together and connecting our community of amyloidosis patients, carers and healthcare professionals while also empowering patients and carers to better manage living with their conditions. The need for additional support within this community is substantial and that was made even clearer by those who came and shared their experiences.

Special thanks to our workshop facilitators Alan Levi (Movement is Medicine), Dr Kathryn Brennan (Meet your Amyloidosis Service) and Sophie Randall (Getting the best from your medical appointments) along with all of the organisations that participated including Patient First Research, Patient Information Forum - PIF, FutureMeds UK, Myeloma UK., and British Society for Heart Failure.

As this was only our second Patient Day and the first that we ran independently as an organisation, we learned a lot from the experience and are already making adjustments to improve future events. On that note, our next Patient Day is in Liverpool on November 15. Please come and join us!

Reserve a space here: https://www.eventbrite.co.uk/e/amyloidosis-uk-patient-day-liverpool-tickets-1994312423143

18/09/2026

Only two days until our Patient Day in Glasgow!

We look forward to seeing you there. For those who are coming, here is the agenda for the day’s events & activities:

11:00am: Arrival and Registration in Main Foyer. Tea, Coffee and Pasties available in the Central Plaza
11:30am: Welcome and Opening Session in Arcoona Room
12:15pm: Hot lunch in the Beardmore Restaurant. Please visit the Marketplace in the Central Plaza
13:30pm: Workshops Commence — see below for details
15:30pm: Coffee Break in the Central Plaza
16:00pm: Conference Closes

Workshop Sessions – please chose one to attend at 1:30pm, one at 2.15pm and one at 3pm
Workshop 1 – Creation Room: Movement is Medicine with Alan Levi
Workshop 2 – Vision Room: Meet your Amyloidosis Service with Dr Kathryn Brennan
Workshop 3 – Cameronia Room: Getting the best from your medical appointments with Sophie Randall

There are still places available if you haven’t booked yet:

Learn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers.

14/09/2026

REMINDER: our Patient Day in Glasgow is this coming Sunday September 20 from 11am to 4pm. We do still have places available so there is still time to register!

This a free event for people living with amyloidosis, their families and carers, featuring:

* Practical workshops to help your journey with amyloidosis
* Specialist amyloidosis presenters
* A marketplace of tools, organisations and innovations for better living
* Opportunities to connect with others living with amyloidosis
* The latest research developments

Register now for free: https://www.eventbrite.co.uk/e/amyloidosis-uk-patient-day-glasgow-tickets-1994311895565

Learn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers.

03/09/2026

Our amazing fundraiser John Tett, at 76 years of age living with amyloidosis, recently completed a challenge of walking 600 km in 3 months.

He’s now decided to make it 1000 km in 6 months!

With the continued support of his family, Team Tett have already raised £3,750 and aren’t stopping there.

Follow and support John’s journey here:

https://www.justgiving.com/page/john-tett

Help John Tett raise money to support Amyloidosis UK

02/09/2026

Based in Scotland or the North of England? Come to our free Patient Day in Glasgow on September 20!

This a free event for people living with amyloidosis, their families and carers, featuring:

* Practical workshops to help your journey with amyloidosis
* Specialist amyloidosis presenters
* A marketplace of tools, organisations and innovations for better living
* Opportunities to connect with others living with amyloidosis
* The latest research developments

Register now for free at https://shorturl.at/7LrFE

Also, please help us reach more people by sharing this with anyone you think may want to attend.

Learn how to live better with amyloidosis. A free event for people living with amyloidosis, their families and carers.