Organizations for Support Groups & Information
Genetic / Rare Conditions
Information for professionals, educators, or individuals through:
- Alphabetical List of Conditions
- Categories of Conditions
- Genetic Clinics (genetic counselor or clinical geneticist)
- Government Consumer Health Information
- Individual to Individual Support
- International Organizations
- International Languages Sites, translation, Spanish
Genetics
- Kids sites (children, teenagers, and young adults)
- National Organizations
- Other Information (ADA, glossaries, travel, special considerations, medicines,
etc.), Advocacy and Diversity
Issues
- Patient Travel
- Searching the Internet
- Siblings
of Children with Genetic / Rare Conditions (sibling
resources, books, newsletters, videos, movies)
- Sibling / Family Member Information
- Starting a Genetic Support Group
A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | R | S | T | U | V | W | X
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[See also International
Organizations, International Languages Translantion
Sites, Spanish genetic sites]
Genetic Focus or Health
Focus including medical genetics
- Child
Health Information Center
- ClinicalTrials.gov,
National Institutes of Health, National Library of Medicine, current clinical
research studies information
- Combined
Health Information Database (CHID) Online, bibliographic
database, article abstracts, genetic or systemic disorders affecting health
- Diseases,
disorders and related topics, Karolinska Institute
(alphabetic list of
specific diseases /disorders) includes neonatal conditions
- Directory
of Online Genetic Support Groups, Mountain States Regional
Genetics Network
- ENTREZ - search using keywords - for
articles in medical literature
- Family
Village Library of Disability-Related Resources
- Father's
Network,
children with special needs
- Finnish Information Center on Mental Retardation
added 2006
- Genetic
and Rare Conditions Site, University of Kansas
- Genetic
Alliance
- Genetic
Resources, Univ. Illinois, Chicago
- Genetic
Information and Patient Services, Inc. (GAPS), Arizona State
Public Information Network, Ariz. State Univ., AZ, Genetic
Disorders & Definitions, Support Groups for genetic disorders and
birth defects, glossary, chromosome anomalies, Australia, Canada, Français,
United Kingdom
- Genetic
Education Materials (GEM) Database,
searchable public health genetics policy documents and clinical genetics educational
materials, National Newborn Screening and Genetics Resource Center (NNSGRC),
Health Resources and Services Administration (HRSA), Maternal and Child Health
Bureau (MCHB)
- Google
(search engine) List of Genetic Disorders
- Health On the Net (HONSelect) List of Rare Diseases [English, français, deutsch, español,
português]
- Health
Hotline 800 numbers
- Internet
Resources for Special Children
- Internet
Resources for Special Children, (IRSC), grouped by categories
- Jewish
Genetic Disease Program, Saint Barnabas Health Care
System
- Karolinski
Institute Library, Congenital, Hereditary, & Neonatal
and Pediatric Diseases / Abnormalities, MeSH Classified and alphabetical
- KidsHealth
- March
of Dimes Resource Center - education materials, genetic
condition fact sheets, pre-pregnancy information. Materials in English and
Spanish
- Medem,
healthcare information from professional medical societies, for physicians
and patients
- Med
Help International, (MHLI) - illnesses and diseases
- go to medical libraries, then general libraries
- Medical
Explorer - medical/health information searches
- Medical
Matrix - specialty and disease categories, see genetics, GMalet, Healthtel Corporation
- National
Center for Education in Maternal and Child Health (NCEMCH), Alert
- National
Health Information Center (NHIC), information on conditions,
resources
- Healthy
Mothers, Healthy Babies Coalition, 121 N. Washington
St., Suite 300, Alexandria, VA 22314 (703) 836-6110
- International
Rare Disease Support Group, Global Health Network Yahoo
- National
Institutes of Health (NIH) select "current clinical
research studies" for clinical trials
- National
Institutes of Health
- National
Library of Medicine (NLM) consumer site, clinical
trails, MEDLINE, health groups
- National
Organization for Rare Disorders (NORD) -
information on rare conditions
- New
York Online Access to Health (NOAH), includes spanish language
genetic links
- Office
of Rare Diseases (ORD), National Institutes of Health Genetic and Rare
Diseases Information Center
- Online
Mendelian Inheritance in Man (OMIM) -
search using keywords
- Our-Kids, for families raising special kids with special needs,
includes Health and Disability-Related
Web Sites
- Parents
Helping Parents
- PEDINFO:
A Pediatrics WebServer, University of Alabama, Conditions
and Diseases: Congenital Syndromes, Congenital Malformations, and Inborn Errors
of Metabolism as well as Genetic and Metabolic Conditions
- PubMed,
National Library of Medicine, access to over 11 million MEDLINE citations
back to mid-1960's, life science journals, links to full text articles, resources
- Rare Genetic Diseases In Children,
(not currently active Feb 2003) PMurphy, with pages
for kids
- Self-Help
Clearinghouse/Sourcebook - groups & ideas on starting
group,Mental HealthNet
- State
Health Agencies, US Food and Drug Administration
Specific
categories / conditions
- Abiding Hearts - parent support group for those who continue a pregnancy with an abnormality
- Anencephaly
Support Foundation - for parents who choose to continue
a pregnancy when a baby is diagnosed with anencephaly
- Heartbreaking
Choice - support group for parents who choose to interrupt
pregnancies with a poor prognosis following prenatal diagnosis
- TheArc
Disability Resources, developmental delay, learning
disabilities, mental retardation
- Blistering
Diseases, Blistering Disease Clinic, Dermatology,
Stanford University Medical Center
- Congenital
Heart Disease, Children's Health Information Network, Information, Resources
- Dermatology
Patient Support and Advocacy Groups, Dept. of Dermatology
- University of Iowa College of Medicine
- Neuromuscular
Resources
Individual
to individual support - numerous conditions
- MUMS (Mothers United for Moral Support) - National Parent-to-Parent
Network
- PACER (Parent Advocacy Coalition for Educational Rights) Center of Minneapolis,
MN
- Parents
Helping Parents - numerous resources
- Taryn's
Club Med - kids with genetic conditions, web
pages for kids
- PaedPalLit,
quarterly literature search for those working with dying children
International
resources (support groups, lay advocacy
groups, languages other than English) Spanish
Resources
Australia
Belgium
Canada
Denmark
Finland 
France
Germany
Italy
Israel
Luxembourg
- Handitel
Information (ADAPTH - Association pour le développement et
la propagation d'aides techniques pour handicapées), SocialNet, Luxembourg
Netherlands
Norway
Sweden
United
Kingdom
Starting a Support
Group
- How
To Develop an Online Support Group or Web Site, EMadara, American
Self-help Clearinghouse
- Starting and Sustaining a Genetic
Support Group, by Joan O. Weiss and Jayne S. Mackta, Genetic
Alliance, practical guide, how to begin and keep an existing
group operating and successful. Johns Hopkins University Press hardcover
(0-8018-5023-1) or paperback (0-8018-5264-1) 1-800-537-5487
Other Information
- Americans
with Disabilities Act Document Center: ADA Statute,
Regulations, ADAAG (Americans with Disabilities Act Accessibility Guidelines),
Federally Reviewed Tech Sheets, and Other Assistance Documents.
- Welcome
to Holland, by Emily Perl Kingsley
- Glossaries
of clinical genetics / human genome project terms
- Guidelines
for Reporting and Writing About People with Disabilities [.pdf
file] University of Kansas and endorsed by other national associations, available
at Nebraska Health and Human Services and US
DOL and TheArc
- Portrayl
in the Media articles, Kids as Self Advocates
- Words
with Dignity
- Old
Disease Names and their Modern Definition, Cape Cod Genealogy
- Medication
Dosage Conversion table
- Medicine
Program, P.O. Box 515, Doniphan, MO 63935-0515, (573)
996-7300. Free medicines for people with limited financial resources
Patient Travel
Charitable or special
fare flights to research and treatment sites, hotels, motels and other lodging
near medical centers
Government consumer
health information
Translating documents into other languages:
Babylon
translation program, free (English to Spanish, German,
Portuguese, French, Italian, Dutch, Japanese, Hebrew, Chinese)
Free
Translation (English, French, German, Italian, Norwegian,
Portuguese, Spanish), text or web page
Google,
Translate Web Pages Automatically, a new translation feature (BETA). Using
machine translation technology, gives English speakers access to pages published
in Italian, French, Spanish, German, and Portuguese
iLoveLanguages
Page (formerly Human
Languages Page), dictionaries, translation programs, cultural
resources (Spanish,
German, French, Russian, Vietnamese, sign language, other)
Language
& Translation Center,
Martindale, English to Other Languages & Vice Versa
Translation
service, AltaVista Babelfish (Spanish,
French, Italian, Portuguese, German, English) - dictionaries, translation
programs, cultural resources for Spanish, German, French, Russian, Vietnamese,
sign language, etc. etc. etc.
Spanish
Genetics Resources
Other Resources
- Books
on Genetic Conditions
- Videotapes
on Genetic Conditions
- People of Every Stripe, P.O.
Box 12505, Portland, OR 97212, Phone (800) 282-0612, Fax (503) 282-0615, E-mail people@teleport.com, Custom
dolls with differences / conditions including blind dolls (cataracts or atrophied
eyes), dolls with hearing aids, prosthetic limbs, IV tubes, G tubes, trachea
tubes, colostomy bags, dolls with Down Syndrome, achondroplasia (dwarfism),
osteoporosis, one shorter leg, other variations
- National
Patient Travel Center, 1-800-296-1217, www.PatientTravel.org,
4620 Haygood Road #1, Virginia Beach, VA 23455, mercymedical@erols.com
- Personal
Ponies,
non-profit organization, provides disabled children with a tiny Shetland Pony
to love and care for -- completely without charge
- Who Named It, Whonamedit.com, a biographical dictionary of medical eponyms and a biography of that person added 2006
Search
GROW (Genetic Resources on the Web)
Genetic
Disorder Information on the Web, Department of
Energy (DOE)
Search the University of Kansas Medical Center Genetics Site for more resources
Searching the web / search engines
Medical World Search
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Genetics Education Center
University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu
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