Siblings and FOP
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: www.sibs.org.uk/support-for-adult-siblings/ebook-for-adult-siblings/
They also have 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
Sibs exists to support people who grow up with or have grown up with a disabled brother or sister. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.
They offer support and advice to families and siblings – young and older. They also offer training and guidance for professionals who are working with families.
www.sibs.org.uk
FOP Siblings is an online community for brothers and sisters of individuals with FOP.
The space is intended to provide a safe and supportive place for adult siblings to share their questions, thoughts, and experiences. The group is moderated by a staff member of the International FOP Association who will share resources periodically to help inform participants and invite conversation within the group.
Request to join here
Contact a family have many years experience of supporting families. They have put together some advice for families to help them navigate the challenges of raising a family with a child or children with a complex need.
www.contact.org.uk
Sense supports young carers with caring responsibilities for a brother, sister or parent with any disability. They offer support and activities to young carers and siblings of people with disabilities, working with young carers and siblings aged 5 -18 and based in the UK.
Most of their work with siblings and young carers happens online which means sessions can be accessed from wherever you are in the UK. They send out free activity packs in the post, so you can try your hand at something new! They will also email you each month with a timetable of online activities. They can provide iPads and IT support to help you access these.
Depending on where you live in the UK, you might also be able to come along to one of our monthly meet-ups. These events give siblings and young carers the chance to spend time together, chat and play.
www.sense.org.uk
Scope is a UK charity working to create a fairer world for disabled people. They believe everyone deserves equal opportunities and works hard to break down barriers. Scope offers support, shares helpful information, and campaigns to change attitudes.
They provide practical information and support for families seeking to balance the needs of siblings when one child has a disability.
Scope: sibling support
“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: https://www.otw.org.uk
Go Beyond provides free, fun respite breaks for children and young people facing challenging life circumstances. They offer week-long breaks in beautiful countryside locations, allowing kids aged 8-15 to take a break from things which may not be easy at home, build confidence, and create lasting memories.
Go Beyond focuses on providing positive experiences through activities like hiking, arts and crafts, and team games, fostering a sense of community and belonging. Their aim is to give these children a much-needed break, boost their self-esteem, and empower them to thrive.
Go Beyond breaks are ideal for young carers who are living with a sibling with FOP. Breaks can be taken in school time (they are an authorised provider of out-of-school education). Families can request a break through a referral from FOP Friends, a teacher, social worker or other professional.
Download a parent/carer guide to a break.
The Big Life Journal offers some practical strategies and ideas to help siblings to get along.
There is also an option to purchase a printable workbook.
Read more
“The impact of a rare disease extends beyond the patient and is interwoven into their entire family dynamic. Siblings of rare disease patients often face personal challenges inside and outside of the home. Guidance and nurturing can empower unaffected siblings to be supportive members of the family while maintaining their own unique identities.
Join NORD to hear from child life specialist Kate McGowen and psychologist Dr. David Rintell, who will discuss commonly observed barriers and best practices for fostering healthy sibling relationships. Rare sibling Hannah Raskin-Gross will share her experience growing up with a brother who has a rare disease and how it has shaped her commitment to advocacy.”
Watch now
Founded in 1990, the Sibling Support Project is an American program dedicated to recognising, promoting and addressing the life-long and ever-changing concerns of millions of siblings of people with additional needs.
Their work spans books and publications, online communities for teen and adult siblings, and workshops and training. They also help communities start Sibshops — lively peer support groups for school-age brothers and sisters of kids with disabilities and health concerns.
www.siblingsupport.org
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: www.courageousparentsnetwork.org/topics/siblings
Download their printable advice here: www.courageousparentsnetwork.org/guides/helping-siblings-cope
