Help, Info & Care Links

Eoryh Fuensalida
ALD and AMN Websites
The Adrenoleukodystrophy Foundation

ALD Info

ALD Connect

AMN Help


Addison’s Disease and Adrenal Diseases Websites
CAH is us

Addison’s disease discussion, information and support network

National Adrenal Diseases Foundation

Adrenal Insufficiency United – provide emergency care kit and EMS Kit for a School Nurse

MedicAlert – provide medical I.D jewellery

Society of Endocrinology – Adrenal Insufficiency Patient Booklet –


Genetic and Rare Diseases Websites
Genetic Alliance UK

Genes in Life

Metabolic Support UK (formerly CLIMB) – national organisation working on behalf of children, young people, adults and families affected by metabolic diseases

Videos: Self Management of Rare Conditions – Opinions & Advice from the people living and working with rare conditions can be found here

The Human Fertilisation and Embryology Authority (HFSA) has listed ALD/AMN as a condition licenced for Preimplantation Genetic Diagnosis (PGD). The current list of licenced conditions can be found here as well as an explanation of PGD.

bluebird bio – developing potentially transformative, one-time gene therapies for severe genetic diseases including childhood cerebral adrenoleukodystrophy (CCALD) and beta-thalassemia/sickle cell disease

Minoryx – committed to finding innovative treatments for life threatening rare diseases by developing a new generation of pharmacological chaperones – offering one of the most promising approaches to the treatment of genetic diseases affecting the central nervous system


Help and Care Websites


Assist UK

Counselling Directory and

Carers Direct

Together for Short Lives

Queen Elizabeth Foundation for Disabled People

International humanitarian organisation The Lions Club has created a potentially life-saving scheme – message in a bottle. Message in a bottle allows emergency services to know basic medical information about you as well as specific medication needs. To find out more, please click here.


Support and Advice Websites
Contact a Family

Citizens Advice Bureau

Best Doctors

Rainbow Trust Children’s Charity

Carers Trust

Carers UK

Disability Living Foundation

Benefits and Advice


Cauldwell Children

Action For Kids


Disability Rights

Money Advice Servce – Care & Disability

The Disability Foundation- DF offers complementary therapies to any person with any disability/chronic illness, their families and carers



Grant Websites
Dreams Come True

Family Holiday Association

Make-A-Wish Foundation

Starlight Foundation

Variety Club

Family Fund

Newlife Foundation

Whizz Kidz


 Disability Rights UK: Receiving and using personal budgets


Bereavement Websites
Childhood Bereavement Network

Child Death Helpline

The Compassionate Friends

The Compassionate Friends Sibling Support


Insurance Websites
The Insurance Surgery (Life & travel insurance for people with medical conditions)

Genetic Alliance UK Insurance Project

Insurewith (Travel insurance for rare medical conditions)

Tourism for All UK – a charity supporting leisure & tourism opportunities for all. Please check for holiday offers

Genesis Travel Insurance – quoting unique code: CHA1382 to raise funds for ALD Life.

MedicAlert Insurance Service


Other Relevant Websites
Patients Know Best (Access your UK medical records online)

National Voices

Children England Charity

The Anthony Nolan Trust

Alzheimer Europe

Society for Endocrinology




Food charts for fat content –