Siblings and FOP

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Living with FOP as an individual is a challenge, but having a sibling with a rare disease brings its own challenges and emotional journey.  Many siblings of someone with FOP take on a caring role too.

Sibs is the UK’s charity, dedicated to supporting individuals who have a sibling with a disability.  Their website has a wealth of information, advice and guidance for adults, including where you can connect with other siblings in a similar situation.  You can download an eBook with advice for adult siblings here:

They also launched at sister charity, Young Sibs, which is focussed on the needs and feelings of young people who have a sibling with a disability.

The charity Contact also has some resources about supporting the siblings of someone with a disability.  There is also a free downloadable guide.

Sense is a charity which works with young carers and siblings aged 5 -18, based in the UK.  They offer a range of support, including online groups.  They also send out activity packs.

In 2022, RARE Revolution Magazine supported by Alexion, AstraZeneca Rare Disease, conducted a study of over 50 siblings aged from 8 to 25, representing over 35 rare conditions.

They produced a report which shares the personal insights of young people living with RARE as part of their every day life.  It highlights the impact of RARE on their education, family life and relationships.  Thank you to all the siblings and carers who took part in this study and shared their stories to raise awareness of the impact of RARE on the wider family.

You can read the report here

“Coping with an illness in the family can often lead to siblings having to adopt a caregiving role and therefore, many miss out on critical areas of childhood development, such as socialising and developing relationships with other children.

At Over The Wall, we provide free residential camps specifically for the siblings of children with health challenges, allowing them to meet new friends, accomplish new challenges and above all, have fun.”  Over The Wall Website

For more information visit:

The Courageous Parents Network is a non-profit which has been set up to empower, support and equip families who are caring for a child with a complex condition.

There is a wealth of information on the website covering a range of issues to help parents navigate the challenges of living with complex need, focusing on the needs of the child, the parents, the siblings, and the wider family.

They have a module on supporting siblings of the child with a rare condition:

Download their printable advice here: