Most genetic disorders are so rare that most people will not have heard of it. The below organisations act on patients behalf offering them support and empowerment.

Advocacy ATLAS

The online Advocacy ATLAS is a toolkit created by Genetic Alliance, Parent to Parent USA , and Family Voices  that provides individuals with special healthcare needs and their families with tools and strategies to advocate for whatever they may need.

Batias Independent Advocacy Service

Batiasoffers independent advocacy services for people aged 14 years and over with learning difficulties, physical and sensory impairments.

01375 389 869

British Institute of Learning Disabilities (BILD)

BILD works with people with learning disabilities and their families to make sure they have the right support to make choices and decisions about their own lives.

0121 415 6960


Coram Voice enables and equips children and young people to hold to account the services that are responsible for their care.

0808 800 5792

Children’s Right Alliance for England

CRAEis an alliance of over 180 organisations committed to promoting children’s human rights.

0203 174 2279


Mencap’s advocacy service enables people with a learning disability to speak up and make decisions about things that are important to them, while their Empower Me service provides personalised advocacy support for people with a learning disability. It aims to help people develop the skills, confidence and knowledge needed to voice concerns and secure rights.                                    

0808 808 1111

National Development Team for Inclusion

The NDTI seeks new opportunities and inclusion in ordinary life for all people who are at risk of exclusion from any part of society.

01225 789 135


seAp is an independent charity that specialises in the provision of advocacy and related services.  Our high quality independent advocacy services support people, especially those who are most vulnerable in society, to have their voice heard, access their rights and have more control over their lives.

We provide advocacy support through well-trained and highly-motivated advocates who enable their clients to express themselves, ensuring that everyone who uses health and social care services can have their voice heard on issues that are important to them.

0330 440 9000


Advocates from the charity VoiceAbility can help you get your voice heard and involved in making key decisions about your care and health needs. Voiceability specialises in working with vulnerable people, such as those who have a disability, communication difficulties, mental health needs, and those who lack capacity, or those who have no one else to support them.

To find the contact details for your local service go to

Youth Enquiry Service

The Youth Enquiry Service offers free counselling, information, support and advocacy for children and adults aged 11 to 25 years across the North East of Essex.

01206 710771