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Resources

Useful Links

Please note: CARES Foundation does not intend links on this online site to be referrals or endorsements of the linked entities and offers no comment regarding the contents of other websites linked to this website.

General

Congenital Adrenal Hyperplasia Due to Steroid 21-hydroxylase Deficiency – An Endocrine Society Clinical Practice Guideline, 2010

CAH Consensus Statement, 2002

CongenitalAdrenalHyperplasia.org Message Board

National Adrenal Diseases Foundation

Androgen Excess Society

CAH Living As Neighbors (CLAN)

Rare Diseases Clinical Research Network

Johns Hopkins University, Division Of Pediatric Endocrinology

The Endocrine Society

Hormone Foundation

The Lawson-Wilkins Pediatric Endocrine Society

The National Institutes of Health

American Society for Reproductive Medicine

American Association of Clinical Endocrinologists

American College of Medical Genetics

National Library of Medicine, MEDLINE

Endocrinology – Online diagnostic manuals

Other Languages

Your Child With CAH in Vietnamese

Your Child With CAH in Chinese

CAH Information En Francais

CAH information En Espanõl:

Non classical CAH

El ABC de la Hiperplasia Adrenal Congenita

Hiperplasia Adrenal Congenita

Guia Para Padres Sobre la Hiperplasia Adrenal Congenita

Genetics

DNA
What is DNA– An Introduction

Genes
Probablity of gene combinations

Genetics Home Reference

21-hydroxylase deficiency information in the Genetics Home Reference

National Center for Biotechnology Information (OMIM)

The Genetic Alliance

A Guide to Understanding Genetics

GeneTests-GeneClinics (Medical Genetics Information Resource)

Gina & You

Resources for Women

Boston Children’s Hospital, Center for Young Women’s Health

Resources for Coping with Loss

Hygeia Foundation

Creating a Family Health History

Norwich Union Family Health Tree

Family Health Portrait

Drugs and Medications

Hormone Therapies
Anti-androgen and aromatase inhibitors explained

CYP
Understanding individual reactions to medications and differences

Message Boards/Chat Groups

CARES Spanish Group

Chat Group for Women with Late-onset CAH
CAHSisters2 is a listserv for adult women with late-onset CAH. You can subscribe to this listserv through Yahoo! Groups, a free, easy-to-use email group service.

International Support Groups

Australian Support Group

CLIMB CAH Support Group, UK

Great Ormond Street Hospital CAH Parent and Patient Group, UK

Addison & Cushing International Federation (ACIF)

CARES/CLAN Support Groups, India

Association Surrénales, France

NVACP, Netherlands

Congenital Adrenal Hyperplasia Support Group of New Zealand (CAHNZ Trust)

Die AGS-Eltern- und Patienteninitiative e.V., Germany

Riksföreningen för Congenital Adrenal Hyperplasia, Sweden

Surgery

Cornell-Weill, NY Presbyterian Hospital

Intersex Society of North America

Other Rare Disease Resources

Global Genes™  – one of the leading rare disease patient advocacy organizations in the world.

National Organization of Rare Diseases (NORD)

The Genetic Alliance

Medication, Laboratories and Conversions

SI and Conventional Conversion Chart