Changing Faces

Changing Faces are a charity set up to help everyone in the UK who has a visible difference, a scar, mark or condition on their face or body that makes them look different. 

www.changingfaces.org.uk

This page provides an overview on tools and techniques to help with confidence and self-esteem in relation to physical differences.

Contact

A charity supporting families of children and young people 0-25 years who have additional needs and or health conditions with a variety of resources. Their site includes an online shop for specialist equipment, toys and clothing. 

https://contact.org.uk

They also hold an A-Z directory of medical conditions which includes lists of the relevant patient support groups for that condition.

Sibs

Sibs is the only UK charity for children and adults who are growing up with or have grown up with a disabled brother or sister. They provide information, support and training on sibling issues for adult siblings, young siblings, parents and professionals. 

Click here to read the Sibs flyer to find out more about their support and how they can help, or visit their website: www.sibs.org.uk

SWAN UK

 SWAN UK supports families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed. 

https://www.undiagnosed.org.uk

They are the only dedicated support network for these families in the UK and are run by the charity  Genetic Alliance UK. 

Mencap

Mencap offer advice, information and support for families and individuals affected by a learning disability. 

www.mencap.org.uk 

FIND

The Cerebra Network for Neurodevelopmental Disorders, is headed by four researchers and is based across four UK academic research sites. The Cerebra Network works to improve the lives of individuals with severe and complex needs and improve outcomes for individuals and their families. The Cerebra Network (formerly The Cerebra Centre) has produced numerous guides for parents on topics ranging from sleep to managing challenging behaviour available on their FIND website www.findresources.co.uk.

Rareminds Wellbeing Hub

Rareminds are a mental health charity for the rare disease community. They have an online Wellbeing Hub www.rareminds.org/wellbeing-hub with resources and information to help you live as well as possible with a rare condition, on important wellbeing topics including emotions and feelings, relationships, managing stress, and mindfulness tools. 

Family Fund

Family Fund is the UK’s largest charity providing grants to low income families raising disabled or seriously ill children and young people across the UK. 

www.familyfund.org.uk

Newlife

Newlife, the charity for disabled children, provides thousands of items of equipment every year.

https://newlifecharity.co.uk

Independent Provider of Special Education Advice (IPSEA)

Independent Provider of Special Education Advice (known as IPSEA) is a registered charity operating in England. IPSEA offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND).

www.ipsea.org.uk

My Cortisol app

The My Cortisol app has been created for Great Ormond Street Hospital for Children NHS Foundation Trust. It aims to help parents and guardians with the administration of hydrocortisone sodium phosphate and hydrocortisone sodium phosphate, which is a prescribed medication for those at risk of adrenal crisis. The app includes a helpful video and a pictorial guide.

My Cortisol for iOS on the App Store

My Cortisol for Android on Google Play

Accessing Public Services Toolkit

If you are facing difficulties with official bodies in trying to access the health, social care and education support services you and your child are entitled to, the charity Cerebra’s Accessing Public Services Toolkit may help.

Jake’s story

More Than Height shared this video with Jake’s story, a 12 year old boy living with Growth Hormone Deficiency (GHD) https://morethanheight.com/en/life-with-growth-disorders/jakes-story 

A Guide to Overgrowth-Intellectual Disability (OGID) Syndromes

The Overgrowth Syndromes Alliance (OSA) is an association of patient advocacy groups representing overgrowth-intellectual disability (OGID) disorders.  The OSA have collated the below guide to OGID Syndromes

Bone Dysplasia

If you are looking for information and support related to Bone Dysplasia in the UK, please contact:

Little People UK

Web: littlepeopleuk.org
Email: [email protected]
Phone: 07925893398

RGA

Web: rgauk.org
Email: [email protected]
RGA Helpline: 0300 111 1970

Child Growth Foundation

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Redburn Road
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