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Quebec Alopecia Areata Foundation
http://qaaf.ca/
QAAF is a supportive community for alopecians and their loved ones. Provides emotional support and educational resources. Find the location, and a meeting schedule.
- [Read more about  Quebec Alopecia Areata Foundation]
OHSU Acoustic Neuroma Treatment Team
http://www.ohsu.edu/ent/ear/acoustic.html
Background information and details of treatment options provided by the Oregon Health and Science University. Also features links to related resources.
- [Read more about  OHSU Acoustic Neuroma Treatment Team]
Chromosome 9P
http://www.9pminus.org/
This is a Non-profit organization working to inform and educate others about this syndrome, also known as Alfi's Syndrome. Includes news, events, and links to additional information.
- [Read more about  Chromosome 9P]
AMS Support Network (AMSSN)
http://www.amssupportnetwork.com/
Support Network (AMSSN) is an online community providing information and support for families affected by the rare condition Ablepharon Macrostomia Syndrome
- [Read more about  AMS Support Network (AMSSN)]
X-linked Adrenoleukodystrophy Mutations
http://www.x-ald.nl/
This database has been initiated to collect data on mutations found in the gene (ABCD1) responsible for X-linked adrenoleukodystrophy.
- [Read more about  X-linked Adrenoleukodystrophy Mutations]
The Alkaptonuria Society
http://www.alkaptonuria.info/
An information and support network for those people diagnosed with Alkaptonuria. Includes discussions, articles and related resources. The Alkaptonuria Information Centre exhibited at the British Society for Rheumatology Annual Conference in Liverpool to raise awareness about Alkaptonuria amongst Rheumatology professionals and to possibly identify new patients
- [Read more about  The Alkaptonuria Society]
Acoustic Neuroma Association of Canada
http://www.anac.ca/
Information including treatment options and post - operative issues. Membership details and message board. The Acoustic Neuroma Association of Canada is a patient-headed, peer support group. It is an incorporated, registered, non-profit organization recognized as such by Canada Revenue Agency.
- [Read more about  Acoustic Neuroma Association of Canada]
International Albinism Center
http://albinism.med.umn.edu/
At the University of Minnesota a team of dedicated research professionals interested in understanding the basis of albinism in humans. Facts about this disorder as well as glossary of terms provided.
- [Read more about  International Albinism Center]
Fight Alopecia
http://www.fightalopecia.com/
The Fighting Alopecia Areata Club aims to raise money and inform the public about this disease that results in the loss of hair on the scalp and elsewhere. Find projects, a forum and a photo gallery.
- [Read more about  Fight Alopecia]
Arthrogryposis Association of Ireland
http://www.arthrogryposis.ie/
Arthrogryposis Association of Ireland provides support group with local contacts, promote education and research on Arthrogryposis and to keep records on the condition.
- [Read more about  Arthrogryposis Association of Ireland]
RCM Autism Notebook Links
http://www.rcmautismnotebook.com/
A resource of information on Autism Spectrum Disorders. Here you can get up to date information on ASD along with links to articles, videos, conferences, workshops, and power point presentations.
- [Read more about  RCM Autism Notebook Links]
Gene Clinics
http://www.geneclinics.org/
Medical genetics knowledge base. NIH funded, expert-authored descriptions of inherited disorders. Covers genetic testing in diagnosis and management and genetic counseling of patients.
- [Read more about  Gene Clinics]
XLH Network
http://www.xlhnetwork.org/
Patient support group for XLH, a genetic condition also known as X-Linked Hypophosphatemia, X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets.
- [Read more about  XLH Network]
Acoustic Neuroma Archive
http://www.anarchive.org/
Informational site by and for acoustic neuroma patients with advice, news, stories, directories and links. Dedicated to providing you with information, advice, and stories to help make informed decisions regarding your treatment options and other Acoustic Neuroma management issues.

- [Read more about  Acoustic Neuroma Archive]
What Is An Acoustic Neuroma
http://www.hopkinsmedicine.org/radiosurgery/disorders/acoustic.cfm
Patient-oriented information on this disorder, including tinnitus, speech discrimination and facial nerve preservation. Treatments include surgery, radiosurgery and sometimes observation.
- [Read more about  What Is An Acoustic Neuroma]
Adrenoleukodystrophy (ALD) Foundation
http://www.aldfoundation.org/
A non-profit organization created to educate about ALD by providing educational materials and links to information associated with the disease.
- [Read more about  Adrenoleukodystrophy (ALD) Foundation]
Children's Liver Alliance
http://kinsey.id.au/liverkids/
A description, the diagnosis, symptoms, treatment and complications of Alagille syndrome. This site was originally called BALT (Biliary Atresia and Liver Transplant Network), the group then combined with the US group and changed names to the Children's Liver Alliance.
- [Read more about  Children's Liver Alliance]
Centre for the Research and Rehabilitation of the Hereditary Ataxias
http://www.ataxiacubana.sld.cu/
The Centre for the Research and Rehabilitation of the Hereditary Ataxias (CIRAH) is a project developed by the Cuban Revolution in order to carry out research on ataxia and help people suffering from this illness by offering them treatments and solutions which will improve their daily life.
- [Read more about  Centre for the Research and Rehabilitation of the Hereditary Ataxias]
IMMD Institute of Medical Molecular Diagnostics Ltd.
http://www.immd.de/
The IMMD is a genetic testing laboratory located in Germany. Provides genetic tests for hereditary breast cancer, various cardiovascular diseases or diseases with onset in childhood.
- [Read more about  IMMD Institute of Medical Molecular Diagnostics Ltd.]
A3243G
http://www.a3243g.com/
Explains a gene defect of mitochondrial DNA which causes several diseases, including maternally inherited diabetes with deafness. Features a newsletter, patient forum and definitions.
- [Read more about  A3243G]
Your Genes, Your Health
http://www.ygyh.org/
Your Genes, Your Health is the DNA Learning Center's multimedia guide to genetic disorders. Complete in depth articles about each disease listed.
- [Read more about  Your Genes, Your Health]
Genetic and Rare Conditions
http://www.kumc.edu/gec/support/
Lay advocacy groups, support groups, information on genetic conditions and birth defects for professionals, educators and individuals. Disorders from A-Z.
- [Read more about  Genetic and Rare Conditions]
The Center For Jewish Genetics Disorders
http://www.jewishgeneticscenter.org/
A critical effort to provide public and professional education for many of the identified Jewish genetic disorders. Find info on screening and counseling, advocacy, events and community resources.
- [Read more about  The Center For Jewish Genetics Disorders]
Primary Ciliary Dyskinesia
http://www.p-c-d.org/en/
Information on a rare congenital disease. Within this brochure you will find some experiences of PCD patients and an answer to frequently asked questions. If, after reading this brochure, you still have questions then you should not hesitate to contact your doctor.
- [Read more about  Primary Ciliary Dyskinesia]
Genetic Disorders: The Links to Diet
http://www.ctds.info/genetic_disorders.html
Explores the role of diet in birth defects and genetic disorders. Includes nutritional links to disorders such as Down syndrome, cerebral palsy, homocystinuria, and cystic fibrosis.
- [Read more about  Genetic Disorders: The Links to Diet]
Acoustic Neuroma Association
http://www.anausa.org/
Acoustic Neuroma Association is a nonprofit organization providing information and support to patients. Providing information and support to persons diagnosed with or treated for acoustic neuroma and other benign tumors of the cranial nerves.
- [Read more about  Acoustic Neuroma Association]
The Department of Neurological Surgery: University of Pittsburgh.
http://www.acousticneuroma.neurosurgery.pitt.edu/
Acoustic neuromas (vestibular schwannomas) treatment options discussed including surgery, gamma knife radiosurgery and fractionated radiotherapy. Statistics, links and reference list provided.
- [Read more about  The Department of Neurological Surgery: University of Pittsburgh.]
Acoustic Neuroma
http://www.neurosurgery.ucsd.edu/cnd/acousticneuroma
UCSD Division of Neurosurgeryis a non profit-organization. An introduction to the condition with treatment options offered by the University of California, San Diego Division of Neurosurgery.

- [Read more about  Acoustic Neuroma]
Acoustic Neuroma Association NSW Inc.
http://www.acousticneuroma.com.au/
Australian organization dedicated to providing information and support for people affected by the condition. Features information on treatment, meetings, contacts and links.
- [Read more about  Acoustic Neuroma Association NSW Inc.]
Acoustic Neuroma Journey
http://anworld.com/
Provides information for acoustic neuroma patients to decide which treatment option is the best; wait and watch, surgery, or radiation. Includes links, staging, diagram, mailing list, and surveys.
- [Read more about  Acoustic Neuroma Journey]
Acoustic Neuroma - The Basic Facts
http://www.med.umn.edu/otol/library/aneuroma/
Find information on the cause, symptoms, diagnosis and treatment of the condition. Hosted by the University of Minnesota, Department of Otolaryngology, Head and Neck Surgery.
- [Read more about  Acoustic Neuroma - The Basic Facts]
Bodies Like Ours
http://www.bodieslikeours.org/
Working towards ending non-consensual genital surgeries on infants and children. Provides support and information for people born with atypical genitals.
- [Read more about  Bodies Like Ours]
Congenital Adrenal Hyperplasia.org
http://www.congenitaladrenalhyperplasia.org/
An education and support network for people and families with Congenital Adrenal Hyperplasia. Includes important medical links, FAQ, message board and archives.
- [Read more about  Congenital Adrenal Hyperplasia.org]
CARES Foundation
http://caresfoundation.org/productcart/pc/index.html
Supporting individuals and families affected by all forms of congenital adrenal hyperplasia. Newsletters, conferences, events, research, and treatment.
- [Read more about  CARES Foundation]
My Son Joe
http://www.mysonjoe.org.uk/
Adrenoleukodystrophy (ALD) is a rare, inherited metabolic disorder. This organization is  dedicated to the author's little boy Joseph, who sadly passed away in August 2003 from Adrenoleukodystrophy, ALD.

- [Read more about  My Son Joe]
Aicardi Syndrome Foundation
http://www.aicardisyndrome.org/
This site can provide information and comfort to families and friends of children diagnosed with Aicardi Syndrome. Links to other website covering medical and developmental issues and general special needs parenting support.
- [Read more about  Aicardi Syndrome Foundation]
Alagille Syndrome Alliance
http://www.alagille.org/
Worldwide support network for people who care about people with alagille syndrome. The purpose of the Virtual Walk is to raise funds to support Alagille Alliance programs and publications. It is also a great way to increase awareness of AGS in your community!
- [Read more about  Alagille Syndrome Alliance]
National Organization for Albinism and Hypopigmentation
http://www.albinism.org/
An organization where people with albinism, their families and those that work with them can get information, ask questions and share their experiences.
- [Read more about  National Organization for Albinism and Hypopigmentation]
The Albinism Fellowship UK
http://www.albinism.org.uk/
The The Albinism Fellowship UK is a purely voluntary run positive, sociable organisation that provides information, advice & support for people with an appropriate interest in albinism.
- [Read more about  The Albinism Fellowship UK]
PanAmerican Society for Pigment Cell Research
http://paspcr.med.umn.edu/
A scientific society devoted to those of us interested in various aspects of pigment cells. Society is a very interactive one, meeting on an annual basis, and is composed of clinicians, developmental biologists, biochemists, immunologists, cell biologists, molecular biologists, chemists and physicists, among other disciplines.
- [Read more about  PanAmerican Society for Pigment Cell Research]
Hermansky-Pudlak Syndrome Network Inc
http://www.hpsnetwork.org
This site is having information and resources about the syndrome and albinism. The Hermansky-Pudlak Syndrome Network Inc. is a volunteer self help, not for profit support group for persons and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorder such as Chediak Higashi Syndrome.
- [Read more about  Hermansky-Pudlak Syndrome Network Inc]
Albinism in Popular Culture
http://www.lunaeterna.net/popcult/
Explore the mythology of albinism. The purpose of this site is to explore the mythology of albinism, to take an in-depth look at the various ways in which this unique trait has been perceived and presented.
- [Read more about  Albinism in Popular Culture]
eMedicine Online Text: Alkaptonuria
http://www.emedicine.com/ped/topic64.htm
 An in depth look at this disorder written by Karl S Roth, MD. From a description to treatment all aspects of this disease are discussed. The authors, editors, and publisher of this journal have used their best efforts to provide information that is up-to-date and accurate and is generally accepted within medical standards at the time of publication.

- [Read more about  eMedicine Online Text: Alkaptonuria]
MedicineNet.com : Alkaptonuria
http://www.medicinenet.com/alkaptonuria/article.htm
This is an article about this disease beginning with an explanation as to what it is, followed by how it is inherited, how it affects the joints, symptoms, diagnosis and treatment.
- [Read more about  MedicineNet.com : Alkaptonuria]
Her Alopecia
http://www.heralopecia.com/
Non-profit community resource for female hair loss sufferers. Created by women, for women®. A free, non-profit community resource for female hair loss sufferers. The only site of its kind, providing an interative community and source of support dedicated entirely to women's hair loss.
- [Read more about  Her Alopecia]
Alopecia Information And Resources
http://www.follicle.com/
Summaries on different hair loss conditions plus dermatological and alternative treatments. Includes abstracts of relevant articles from medical journals.
- [Read more about  Alopecia Information And Resources]
Alopecia Online
http://www.alopeciaonline.org.uk/
Alopecia UK provides information, advice and support for people with Alopecia Areata, Alopecia Totalis and Alopecia Universalis. Alopecia UK is run by a management committee who are responsible for the day-to-day operation and development of the charity.
- [Read more about  Alopecia Online]
National Alopecia Areata Foundation
http://www.alopeciaareata.com/
A non profit organization dedicated to providing information about alopecia areata. With support groups in the USA and contacts with similar support groups worldwide.
- [Read more about  National Alopecia Areata Foundation]
Alpha-1 Antitrypsin Deficiency Association
http://www.alpha1.org/
Alpha-1 Antitrypsin Deficiency Association is a Non-profit organization offering information and support to patients, caregivers, and families effected by this disease.
- [Read more about  Alpha-1 Antitrypsin Deficiency Association]
Spiderspun
http://www.spiderspun.net/
A haven for those affected by Alpha-1 Antirypsin Deficiency. Facts, chat rooms, assistance programs, and reference material. Mission is to raise Alpha-1 Awareness through the patient's perspective.
- [Read more about  Spiderspun]
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