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Supporting children, young adults and their families up to the age of 30

Supporting children, young adults and their families up to the age of 30

Our partners and helpful links

Neurofibromatosis Type 1 (NF1) is a complex condition that affects individuals in various ways. We understand that navigating the challenges of NF1 can be overwhelming, which is why we collaborate whenever possible and offer links to a variety of organisations and charities that provide specialised support across different aspects of the condition. Below is a list of these partners and resources. While this list is by no means exhaustive, we hope it will guide you in the right direction and provide valuable support on your journey.

We collaborate directly with those marked with an *

Tumour Support Scotland*

Tumour Support Scotland provides support and resources for individuals affected by tumors, including those related to Neurofibromatosis Type 1 (NF1). They offer information, emotional support, and practical assistance to help patients and their families navigate their journey.

NF Association of Ireland*

The NF Association of Ireland supports individuals and families affected by Neurofibromatosis in Ireland. They provide information, advocacy, and resources tailored to those living with NF1, aiming to improve understanding and care for the condition.

Nerve Tumours UK (formerly NF Association)

Offers comprehensive support for individuals and families affected by NF1, including information, advocacy, and specialist advisors across the UK.

Children’s Tumor Foundation (USA)*

The Children’s Tumor Foundation is a global organization dedicated to finding a cure for neurofibromatosis (NF) and supporting those affected by the condition. They focus on research, advocacy, and providing resources and support for families dealing with NF1, NF2, and schwannomatosis. They also offer information on clinical trials and connect families with valuable resources.

Hypermobility Syndromes Association

The Hypermobility Syndromes Association supports individuals with hypermobility and related conditions. They offer resources, information, and a community for those affected by joint hypermobility, which can sometimes be associated with NF1.

Scoliosis Association UK (SAUK)

SAUK provides support and information for individuals affected by scoliosis, a condition that can be associated with NF1. They offer resources on treatment options, support groups, and guidance for living with scoliosis.

Changing Faces

Changing Faces is the UK’s leading charity for people with visible differences or disfigurements, including those caused by NF1. They offer support services, counseling, and advocacy to help individuals build confidence and face the world with pride.

Rays of Sunshine

Rays of Sunshine grants wishes for children with serious or life-limiting conditions, including those affected by NF1. They provide memorable experiences and support to brighten the lives of children and their families during challenging times.

Barrie Wells Trust*

The Barrie Wells Trust runs the “Box4Kids” initiative, providing VIP experiences at sports events for seriously ill and disabled children, including those with NF1. The trust aims to create unforgettable memories for children and their families.

Beacon for Rare Diseases*

Beacon for Rare Diseases is dedicated to supporting and connecting rare disease patient groups, including those focused on NF1. They provide resources, advocacy, and a platform for collaboration to improve the lives of those with rare conditions.

Rare Minds*

Rare Minds focuses on the mental health challenges faced by individuals with rare diseases, including NF1. They offer support services, resources, and advocacy to address the psychological and emotional needs of the rare disease community.

NF Patients United*

NF Patients United is a European umbrella organization that unites national neurofibromatosis patient groups, including those from the UK. They advocate for better research, treatment, and care for individuals affected by NF1 and related conditions.

British Skin Foundation

Supports individuals with skin manifestations of NF1, such as café-au-lait spots and neurofibromas, by funding research and providing information on skin-related issues.

The Brain Tumour Charity

Provides information, support, and funding for research into brain tumors associated with NF1, offering a wide range of resources for affected individuals and families.

Contact (for families with disabled children)

Offers advice, support, and resources for families of children with disabilities, including those with NF1, focusing on practical and emotional support.

Shine (Spina Bifida, Hydrocephalus, Information, Networking, Equality)

Although primarily focused on spina bifida and hydrocephalus, Shine offers resources and support for neurological issues that can overlap with NF1 symptoms.

SENSE

Supports individuals with complex disabilities, including those who may experience hearing and vision loss due to NF1, providing tailored support and services.