donate_button

Help, Info & Care Links

Eoryh Fuensalida
ALD and AMN Websites
The Adrenoleukodystrophy Foundation www.aldfoundation.org

X-linked Adrenoleukodystrophy Database www.x-ald.nl

ALD Connect www.aldconnect.org

AMN Help www.amnhelp.com

 

Addison’s Disease and Adrenal Diseases Websites
CAH is us www.cahisus.co.uk

Addison’s disease discussion, information and support network www.addisons-network.co.uk

National Adrenal Diseases Foundation www.nadf.us

Adrenal Insufficiency United www.aiunited.org – provide emergency care kit and EMS Kit for a School Nurse www.form.jotform.us/form/30264976834160

MedicAlert – provide medical I.D jewellery www.medicalert.org.uk/landing/making-your-your-addison-s-treatment-continues-in-an-emergency

Society of Endocrinology – Adrenal Insufficiency Patient Booklet – https://www.endocrinology.org/policy/docs/16-04_Adrenal%20insufficiency.pdf

 

Genetic and Rare Diseases Websites
Genetic Alliance UK www.geneticalliance.org.uk

Genes in Life www.genesinlife.org

Children Living with Inherited Metabolic Diseases – national organisation working on behalf of children, young people, adults and families affected by metabolic diseases www.climb.org.uk

Videos: Self Management of Rare Conditions – Opinions & Advice from the people living and working with rare conditions can be found here www.geneticalliance.org.uk/self-management-opinions-advice.htm

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 www.hfea.gov.uk/cps/hfea/gen/pgd-screening.htm 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 www.bluebirdbio.com/product-ald.php

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 www.minoryx.com/pipeline/x-linked-adrenoleukodystrophy

 

Help and Care Websites
Cyclo-Ssage www.cyclo-ssage.com

MusMate www.musmate.co.uk

Assist UK www.assist-uk.org

Counselling Directory www.counselling-directory.org.uk and www.counsellordirectory.com

Carers Direct www.nhs.uk/carersdirect

Together for Short Lives www.togetherforshortlives.org.uk

Queen Elizabeth Foundation for Disabled People www.qef.org.uk

 

Support and Advice Websites
Contact a Family www.cafamily.org.uk

Citizens Advice Bureau www.citizensadvice.org.uk

Best Doctors www.bestdoctors.co.uk

Rainbow Trust Children’s Charity www.rainbowtrust.org.uk

Carers Trust www.carers.org

Carers UK www.carersuk.org

Disability Living Foundation www.dlf.org.uk

Benefits and Advice www.benefitsandwork.co.uk

Cerebra www.cerebra.org.uk

Cauldwell Children www.caudwellchildren.com

Action For Kids www.actionforkids.org

MERU www.meru.org.uk

Disability Rights www.disabilityrightsuk.org

Money Advice Servce – Care & Disability https://www.moneyadviceservice.org.uk/en/categories/care-and-disability

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

 

 

Grant Websites
Dreams Come True www.dreamscometrue.uk.com

Family Holiday Association www.familyholidayassociation.org.uk

Make-A-Wish Foundation www.make-a-wish.org.uk

Starlight Foundation www.starlight.org.uk

Variety Club www.variety.org.uk

Family Fund www.familyfund.org.uk

Newlife Foundation www.newlifecharity.co.uk

Whizz Kidz www.whizz-kidz.org.uk

Turn2us www.turn2us.org.uk

 Disability Rights UK: Receiving and using personal budgets http://www.disabilityrightsuk.org/receiving-and-using-personal-budgets

 

Bereavement Websites
Childhood Bereavement Network www.childhoodbereavementnetwork.org.uk

Child Death Helpline www.childdeathhelpline.org

The Compassionate Friends www.tcf.org.uk

The Compassionate Friends Sibling Support www.tcfsiblingsupport.org.uk

 

Insurance Websites
The Insurance Surgery (Life & travel insurance for people with medical conditions) www.the-insurance-surgery.co.uk/insurance

Genetic Alliance UK Insurance Project www.geneticalliance.org.uk/insurance.htm

Insurewith (Travel insurance for rare medical conditions) www.insurancewith.com

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

Genesis Travel Insurance www.genesischoice.co.uk/charity – quoting unique code: CHA1382 to raise funds for ALD Life.

MedicAlert Insurance Service www.medicalert.org.uk/medicalert-insurance-services/medicalert-insurance-services

 

Other Relevant Websites
Patients Know Best (Access your UK medical records online) www.patientsknowbest.com

National Voices www.nationalvoices.org.uk

Children England Charity www.childrenengland.org.uk

The Anthony Nolan Trust www.anthonynolan.org.uk

Genetic Alliance UK (formally GIG.org.uk) www.geneticalliance.org.uk

Alzheimer Europe www.alzheimer-europe.org

Society for Endocrinology www.endocrinology.org

Endobible www.endobible.com

 

Diet

Food charts for fat content – http://apjcn.nhri.org.tw/server/info/books-phds/books/foodfacts/html/data/data2g.html#chart

Twitter

@ALDLife

Gain an experience as unique as you by volunteering ur time with ALD Life, explore ur creativity & meet new people… https://t.co/iIAFgf61kV

Facebook

Unable to display Facebook posts.
Show error

Error: (#803) Some of the aliases you requested do not exist: 158550231901192
Type: OAuthException
Code: 803
Please refer to our Error Message Reference.