Living Well with FOP…
The Living Well Campaign, led by Metabolic Support UK and Beacon for Rare Diseases, is on a mission to redefine rare disease support. The primary goal of the movement is to ensure individuals are equipped to thrive and flourish – to live well.
For so many rare diseases, approved therapies are still out of reach. It is this reality which is driving the Living Well Campaign to focus on enhancing daily life – giving those with a rare condition the opportunities and self-belief to ‘live well’.
The movement is committed to improving access to vital resources, including education, employment opportunities, financial assistance, and crucial emotional well-being support. The key initiatives are designed to create meaningful change, including dedicated advocacy efforts and comprehensive training on disability rights.
The Living Well Movement was launched in 2025 with a Symposium in Stoke. The organisers, MSUK and Beacon, brought together the powerful and diverse voices from across the rare disease community. FOP Friends was proud to participate in the Symposium, bringing the invaluable experiences of those living with FOP directly into the conversation.
The Living Well Symposium: A Focus on Quality of Life for Rare Disease Patients
In March 2025, Andrew and Helen attended the first Living Well Symposium, Stoke. The Symposium was jointly presented by Metabolic Support UK and Beacon for Rare Diseases, bringing together patients, advocates, healthcare professionals, policymakers, and researchers. Its aim was to explore a vital question: what does it truly mean to “live well” when managing a rare condition?
Given that 95% of rare conditions currently lack an approved treatment, the Symposium deliberately shifted the focus from seeking a cure to enhancing care. It emphasised crucial aspects such as quality of life, inclusion, and dignity. The event highlighted the significant challenges faced by the rare disease community but also celebrated their remarkable resilience and determination to live well, every day. Presentations by two young people living ectodermal dysplasia illustrated how they lived well while managing the challenges of their condition.
Patient organisations were invited to present a science poster with a difference: one which illustrated their story. You can see some of the posters here: Living Well Posters
FOP Friends was proud to participate in the Symposium, bringing the invaluable experiences of those living with FOP directly into the conversation.
You can find out more about the Living Well movement on the website for Metabolic Support UK.
Download a summary here: Information
CEO of MSUK, Kirsty Hoyle, sat down with editor of RARE Revolution Magazine, Nicola Miller, and they chatted about about what ‘living well’ means in their own homes as rare mums. Read the article here: Living well: shifting the narrative
Sharon is one of our FOP friends and lives in Tennessee, USA. She lives with FOP and has been a source of friendship and support for so many, the world over.
Sharon has a passion for all things creative and loves to card-make. She was the editor of the ‘What is FOP? A Guidebook for Families’ which is an invaluable resource for every family and has been for over 30 years. Currently, Sharon continues as editor for the revised edition which is in progress.
Sharon has reflected on her life with FOP and the little things she has done to make things better and have helped her to live well. She has kindly given her permission for us to share it.
Read them here: Rhythms and Routines
Sharon also writes a blog.
You can follow her here: Kindness Matters
