After the diagnosis…
After the diagnosis…
A diagnosis of FOP or POH is overwhelming—bringing with it a mix of emotions, uncertainty, and countless questions. In these early days, it’s natural to feel unsure of where to turn. Our website contains a wealth of factual resources and information, but in the early days, this might not be what you need.
This space has been created to offer support, guidance, and reassurance for families navigating life after a diagnosis. A place to reflect on the diagnosis and what it means for you and your family. With time, support, and the right information, families do find their way forward—and come through the other side stronger, more connected, and ready to face what lies ahead.
Here you’ll find trusted information, practical resources, and personal insights from those who have been where you are now. Some of the resources are linked to FOP and POH, others are just voices of parents who are own their own journey, with shared experiences and emotions.
Whether you’re a parent, a young person, or someone supporting a loved one, we hope these resources help you feel informed, empowered, and never alone.
You’re not on this journey by yourself. We and your community are here, walking alongside you—every step of the way.
The Sunderland-based organisation Choice Wellbeing CIC has done it again, with this invaluable book for families as they come to terms with their child’s diagnosis.
The guide supports families after any diagnosis, but the advice holds true for parents who have just been told their child has FOP or POH. Written by a parent-carer, for parent carers, this offers reassurance, practical advice, and reflections from others with lived experience. It focuses the on mental health and wellbeing of parent-carers rather than navigating the challenges they will inevitably face. The guide advocates for parents learning to look after themselves to prepare for the mammoth journey ahead.
It is an honest guide, written with love, from a parent who has been where you are today. With warmth and clarity, it encourages connection, step-by-step navigation, and hope for the future. A reminder you are not alone on this journey.
Nicky is mum to Isla who is 11 and lives with FOP. Nicky has reflected on her own journey as an ‘FOP Mum’ and sensitively articulated her thoughts and feelings.
Nicky generously shares her learnings so far of the incredible – and at times heartbreaking – journey, with her beautiful and dynamic daughter.
To receive a copy, contact us: Reflections from an FOP Mum
Rare Minds is a specialist counselling service which offers bespoke counselling and talk therapy for those living with a rare condition.
They have created a Wellbeing Hub, with guidance for the many areas where you may have questions, both immediately after the diagnosis and the years to come.
Read their advice on how to get through days and weeks after the initial diagnosis here: Early Days
Thanks to a grant from Jeans for Genes, we are able to offer our families a series of counselling sessions, free of charge. Rare Minds delivers this service.
These sessions are available to parents of someone with FOP, and those living with FOP over the age of 14. There are male and female counsellors.
If you would like to use this service, please contact Rare Minds directly. This will ensure confidentiality. FOP Friends will not be told who has accessed the service.
Rare Minds
Rare Revolution have created easy-to-read top tips for new parents after a diagnosis.
Global Genes’ RARE Concierge Patient Services offers free, personalised support for individuals and families affected by rare or undiagnosed diseases.
Run by a team of experienced guides—many of whom are patients or caregivers themselves—the service helps people navigate diagnosis, care, and connection. Support includes help finding specialists, clinical trials, emotional and mental health resources, and financial aid. While not a substitute for medical advice, it’s a trusted point of contact for tailored guidance. The goal is to empower patients and caregivers with information, community connections, and practical help, wherever they are in their rare disease journey.
Learn more or arrange an appointment here: Concierge Service
The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses, developed by the National Alliance for Caregiving in collaboration with Global Genes, offers a comprehensive resource for navigating the multifaceted challenges of caregiving.
Drawing from the experiences of caregivers and experts, it addresses nearly 100 topics, including the complexities of obtaining an accurate diagnosis, managing medical care, and enhancing quality of life through education and recreation. The guidebook also highlights a variety of supportive resources and organisations, aiming to empower caregivers with practical strategies and emotional support.
Download the book for free here: Circle of Care
Talking FOP Guide
Ipsen UK have worked with some UK families affected by FOP, as well as FOP Friends, to develop this helpful guide. Those who have been recently diagnosed, or who perhaps may be starting a new chapter in their life, may find this guide a useful starting point. It includes tips and advice to help begin conversations with others, from family and friends to schools and employers.
Download here: Talking FOP
