Rareminds is a specialist, non profit, rare disease counselling and psychotherapy service in the UK. Thanks to a generous grant from Genetic Disorders UK, FOP Friends is able to offer confidential, counselling sessions for those living with FOP in the UK.
If you would like to access support from Rareminds, please contact Rebecca at Rareminds directly. This will ensure your confidentiality.
Samaritans works to make sure there is always someone there for anyone who needs someone. You can chat with them over the phone or online – talk to one of their listening volunteers using their web chat service.
They are here to listen, no judgement, no pressure, and help you work through what’s on your mind.
The Resilient Living Educational Series is an opportunity for members of the FOP community to come together to learn about ways to incorporate habits that support their mental and physical well-being in their day-to-day living.
This is a series of webinars and activities to support those living with FOP develop their own resilience. Read more: Resilient Living Program
Rainbow Trust is the leading organisation providing emotional and practical support to families who have a child with a life threatening or terminal illness.
Rainbow Trust pairs each family with an expert Family Support Worker, giving them practical and emotional support. They support the whole family including parents, carers, the unwell child, brothers, sisters and grandparents.
Gene People, previously known as Genetic Disorders UK, is a registered charity with a vision to improve the lives of individuals and families affected by genetic conditions.
They run a Genetic Counsellor-led Helpline for those affected by a genetic condition and their families, and support a Partnership Network of patient organisations working with those with genetic conditions.
Their helpline is an expanding service and is the only free helpline in the UK for all genetic conditions. It is a confidential and non-judgemental space for you to find out the information you need and discuss your feelings, concerns and fears about a genetic condition.
Blackdog Outdoors was established to provide the service of sport in supporting mental health.
The effects of outdoor activities can include stress reduction, improved mood, improved self-esteem and improved health and general well-being. The real challenge lies in promoting the idea of “green exercise” to those that will benefit from it, providing opportunities for those people to take up outdoor activities, and to support and encourage them as they set out on their individual adventures.
They organise a range of outdoor events to encourage people to get outdoors, meet new people, and hopefully feel a bit better. Events are organised all around the UK.
Anxiety UK is the largest national user-led charity dealing with anxiety in the UK.
Many of their small staff team have their own lived experience and understand the distress, isolation and misery that anxiety can cause. They believe strongly in choice and offer a variety of services to support people affected by anxiety, including information and helpline services to talking therapy and courses.
Mind is a UK charity committed to supporting those with a mental health problem.
They provide advice and support to empower anyone experiencing a mental health problem. They campaign to improve services, raise awareness and promote understanding. They empower people to understand their mental health and the choices available to them through their resources like Infoline, Legal Line, and other award-winning mental health resources.
The British Association for Counselling and Psychotherapy (BACP) is the professional association for members of the counselling professions in the UK.
They help the general public, individuals and commissioners make better, more informed choices about the provision of counselling, and continue to raise the ethical and professional standards of the profession. They provide a search function where you can find accredited counsellors in your area. It is advisable to check that a therapist is registered with the BACP before commencing any therapy sessions.
The team at the Royal National Orthopaedic Hospital Stanmore have psychologists who have experience of working with patients with FOP.
Please contact the FOP Clinical Nurse Specialist team, or speak to your consultant, if you would like to be referred.
The Hub of Hope is the UK’s leading mental health support database
It is provided by national mental health charity, Chasing the Stigma. Chasing the Stigmais a national mental health charity on a mission to normalise and humanise conversations about mental health, whilst ensuring that everyone in the UK can access clear pathways to support, whenever and wherever they need it.
You can tailor resources to your preference using their database resources so that your mental health needs are met.
Action for Happiness are a registered charity and a movement of people taking action to create a happier and kinder world, together. They offer a range of resources ranging from leaflets, podcasts, books and blogs from professional doctors and psychologists on how to maximise happiness and wellbeing in your life.
Better Health – Every Mind Matters is a programme launched by the NHS
They have provided resources on supporting others’ mental health, specifically looking after a child or a young person. They offer tips on how to spot if a child is struggling and ways to support them.
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