New Zealand Klinefelter Association
XYY -- Stereotype of the Karyotype
Free
Molecular Visualization
Software
US National Center
for Biotechnology Information
NIH Center for
Molecular Modeling
Brookhaven National
Laboratory
MacroMolecular
Swiss-3D-Image
Chemistry Dept, Imperial
College of Science, Technology and Medicine
Journal
of Protein Science
Mathematics
& Molecules
Cn3D
WWW Entrez
WebLab
Swiss-PdbViewer
LinusLite
MacMolecule
MovieMol
Molecular Animations
VMD
Theoretical
Biophysics Group
Hingefind
Computational
Center for Macromolecular Structures,
Midas+
ChemDraw &
Chem3D
New Look
MolGen
US NIH
Molecular Modeling
Reference Databases
McDermott Center for
Genome Research Home Page
Molecular
and Cellular Biology Home Page at Roswell Park
BAC/PAC Resources
Home Page at Roswell Park
Comprehensive
list of Biosciences network resources
Search
GDB using keywords
GDB
Browser
Ideogram Interface to GDB
Search GDB by clicking on chromosomal bands
Human
Genome Project Internet Resources
Query the
GenQuest server
Human STS vs YAC
Screening Database
Mouse Genetic Map
Information
Mouse
Genome Database
Mouse
Locus Catalog
Encyclopedia
of the Mouse Genome
Forms
searching of several sequence databases
Biologist's
Control Panel
YAC
Data Searches
CEPH-Généthon
Integrated Map
GenomeView
Map Data Resources
Genome
research network resource list
CHLC
marker data
CHLC maps
Human
chromosome 19 physical map
Calvary Chapel
CC of Redding
LCC of Redding
Human 2-D Page Database
National Support Groups / Information Sites Inclusion on this list is not
an endorsement.
I list sites of national support groups I have found on the Web and I do not review them
for the accuracy of the information they provide. Any information you find should be
reviewed with your health care provider for accuracy.
Sites are listed alphabetically by disease/conditon name or disease/condition category.
For example, Marfan Syndrome or Miscarriage are under "M"
If any of these links change, send email to starwalker@snowcrest.net
with the new link.
Click letter above to "jump down" the page to that letter.
A The ALS Reporter Comprehensive Resource, including support group listings.Amyotrophic Lateral Sclerosis Association ALS appears on Chromosome 2 Ankylosing Spondylitis Center National Ankylosing Spondylitis Society U.K. Spondylitis Association of America National Ataxia Foundation A-T in Touch - U.K. Ataxia Telangiectasia Children's Project B C National Cancer Institute American Cancer Society National Childhood Cancer Foundation Y-ME: National Organization for
Breast Cancer Information and Support CanSearch : A guide to cancer resources on the Internet, courtesy of the National Coalition for Cancer Survivorship.OncoLink at the University of Pennsylvania is an excellent comprehensive cancer resource. University of Michigan Comprehensive Cancer Center An excellent comprehensive cancer resource. CancerNet Web Info Server Texas Cancer Data Center. Yahoo! Cancer Index: If you can't find what you are looking for at the above sites, try this index. Carbohydrate Deficient Glycoprotien syndrome Parent Forum Carbohydrate Deficient Glycoprotien syndrome Society Carbohydrate Deficient Glycoprotien syndrome Family Network Inc. Chromosome Deletion Outreach Includes abnormalities involving inversions, duplications, rings, duplications, and translocations Chromosome 4 Wolf-Hirschorn Syndrome : 4p- Parent Network HomepageChromosome 5 Chromosome 11 Chromosome 13 Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) Chromosome 16
Chromosome 17 Smith-Magenis Syndrome : PRISMSChromosome 18 Chromosome 18 Registry & Research SocietySupport Organization for Trisomy 18, 13 and Related Disorders (SOFT) X Chromosome Klinefelter Syndrome & Associates Turner's Syndrome Society of the United States Turner's Syndrome Society, Texas Cri Du Chat Syndrome Support Group - U.K.5p- Society 'Cri du Chat syndrome' (opening date on April 1, 1997) Cystic Fibrosis-WWW Online Online archive of CF information. A must visit site.Cystic Fibrosis FoundationCanadian Cystic Fibrosis Foundation D Association for Children with Down Syndrome Down Syndrome Research Foundation National Down Syndrome Society The San Fransisco Bay Area Down Syndrome Page National Down Syndrome Congress E F |
- Familial Spastic Paraparesis (not a support group but contains good links)
- Muscular Dystrophy Association
G
- Gaucher Disease
- Glaucoma
- Glutaric Aciduria Homepage
- Association for Glycogen Storage Disease - U.K.
Glaucoma
Research FoundationThe Glaucoma FoundationH
- Congenital Heart Defects
- Hemochromatosis
- Hemophilia
- Hermansky-Pudlak Syndrome Network Inc.
- Hermaphroditism
- Hereditary Hemorrhagic Telangiectasia Foundation International Inc.
- American Pseudo-obstruction and Hirschsprung's Disease Society
- Holt-Oram Syndrome Support Group - U.K.
- Hunter Syndrome: at CSMRD
- Huntington Disease, (HD)
- Hurler Syndrome: at CSMRD
- Hydrocephalus
The Congenital
Heart Disease Resource Page
Congenital Heart Defects - diagrams
Iron Overload Diseases Association, Inc.
Hemochromatosis Foundtaion, Inc.
The Canadian Hemochromatosis Society
I
- National Incontinentia Pigmenti Foundation
- Infertility
- Iron Overload Diseases Association, Inc.
- Jacobsen syndrome
- Jeune's syndrome: (Asphyxiating Thoracic Dystrophy) Family Support Group
- Kearns-Sayre syndrome (KSS): at UMDF
- Klinefelter Association, New Zealand
- Klinefelters Syndrome Information-New Zealand
- Klinfelter Syndrome, Meet The People
- KS Information Site
- Klinefelter Syndrome & Associates
- Klippel-Feil Syndrome Network
- Klippel-Trenaunay Syndrome Support Group
- Lactic Acidosis: at UMDF
- Landau Kleffner syndrome Support Group - U.K.
- Leber Hereditary Optic Neuropathy: at UMDF
- Leigh's syndrome
- Lesch-Nyhan Syndrome: Purine Research Society
- Lethal Infantile Cardiomyopathy (LIC): at UMDF
- United Leukodystrophy Foundation
- Limb Defects at 'The Amputee Homepage'
- Lipomyelomeningocele Family Support Network
- Biliary Atresia & Liver Transplant Network Inc.
- Luft disease: at UMDF
- Lymphedema
Leigh's syndrome
: at UMDFPeople Affected by Leigh's Syndrome Homepage
- Maple Syrup Urine Disease (MSUD) Family Support Group
- National Marfan Foundation
- Miscarriage
- Mitochondrial Cytopathy: at UMDF
- The United Mitochondrial Disease Foundation
- Mitochondrial Encephalomyopathy Lacitc Acidosis & Stroke-like episodes (MELAS): at UMDF
- Mitochondrial Encephalopathy: at UMDF
- Mitochondrial Myopathy: at UMDF
- Moebius Syndrome Foundation
- The Canadian Society for Mucopolysaccharide & Related Diseases
- Includes Disorders such as:
- Hurler Syndrome
- Hunter Syndrome
- Sanfilippo Syndrome
- Morquio Syndrome
- Maroteaux-Lamy Syndrome
- Tay Sachs & Gauchers Diseases and Many others
- Multiple Sclerosis
- Muscular Dystrophy Association: USA, Canada, Australia
- Myasthenia Gravis
- The Myelin Project
- Myoclonic Epilepsy and Regged-Red Fibers (MERFF): at UMDF
- Myoneurogastrointestinal Disorder and Encephalopathy (MNGIE): at UMDF
SANDS - a support group for parents who experience miscarriage, stillbirth,
or neonatal death.
Hygeia: An Online Journal for Pregnancy
and Neonatal Loss. "A new resource for women's health and healing."
Maintained by Michael Berman, M.D.
MS-Direct:Multiple Sclerosis Support
The Multiple Sclerosis Foundation
National Multiple Sclerosis Society
International MS Support Foundation
The World of Multiple Sclerosis
- NADH Dehydrogenase (NADH-CoQ reductase) Deficiency: at UMDF
- Neonatal Death - see Miscarriage
- Neurofibromatosis
- Neuropathy Ataxia and Retinitis Pigmentosa (NARP): at UMDF
- Noonan Syndrome
- Opsoclonus-Myoclonus Support Network
- Osler-Weber-Rendu at HHT Foundation International Inc.
- Osteogenesis
- Oxalosis & Hyperoxaluria Foundation
- Cure Paralysis Now
- Parkinsons (MJF Foundation)
- Pearson Syndrome: at UMDF
- Phosphoribosyltransferase Deficiency: Purine Research Society
- National PKU News
- Porphyria
- Prader-Willi Syndrome
- Pregnancy Loss- see Miscarriage
- Pseudo-obstruction and Hirschsprung's Disease Society
- Pseudoxanthoma Elasticum (PXE)
- National Psoriasis Foundation
- Purine Nucleoside Phosphorylase Deficiency: Purine Research Society
- Purine Research Society
- Pyruvate Carboxylase Deficiency: at UMDF
- Pyruvate Dehydrogenase Deficiency: at UMDF
American Porphyria
Foundation
Porphyria - A patients guide:
Drug lists, diagnosis, management & therapy. By Professor Michael R. Moore at the
Porphyria Research Unit, University of Queensland
Pseudoxanthoma Elasticum (PXE) International, Inc.
National Association for Pseudoxanthoma Elasticum - Australia
- Parkinsons (MJF Foundation)
- The Parkinson's Institute
- American Parkinson Disease Association
- Parkinson's Disease Foundation, Inc.
- National Parkinson Foundation, Inc.
- Research! America
- We Move - Worldwide Education and Awareness for Movement Disorders
- Mr. Long-Term Care
- Congress.com
- Congress.org
- Roll Call
- ASNTR
- Parkinson Foundation of Canada
- The Mulligan Foundation
- Parkinson's Action Network
- Northwest Parkinson's Foundation
- Parkinson's Information
- People Living with Parkinson's (PLWP, Inc.)
- Retinitis Pigmentosa at the Foundation Fighting Blindness
- IRSA (International Rett Syndrome Association)
- Riley-Day Syndrome
aka Familial Dysautonomia- Riley-Day Syndrome
- Sanfilippo syndrome At the CDGS Family Network
- Scleroderma
- Septo Optic Dysplasia 'Focus' Support Group
- Short Stature: Little People of America
- Shwachman Syndrome Support Group
- Shwachman Diamond Syndrome
- Sjogren's Syndrome Foundation Inc.
- Greenberg Center for Skeletal Dysplasias
- Smith-Lemli-Opitz Syndrome Advocacy & Exchange
- Smith-Magenis Syndrome: PRISMS
- Sotos Syndrome Support Association
- Families of Spinal Muscular Atrophy Home Page
- Spina Bifida
- Still birth- see Miscarriage
- Succinate Dehydrogenase Deficiency: at UMDF
Lipomyelomeningocele
Family Support NetworkSpina Bifida Resource PageAssociation for Spina Bifida and Hydrocephalus
- Late Onset Tay-Sachs Foundation
- National Tourette Syndrome Association, Inc.
- Treacher Collins Syndrome
- Support Organization for Trisomy 18, 13 and Related Disorders (SOFT)
- The National Tuberous Sclerosis Association
- Turner Syndrome
- Ubiquinone-Cytochrome C Oxidoreductase Deficiency: at UMDF
- National Urea Cycle Disorders Foundation
- Usher syndrome at the Foundation Fighting Blindness
- Velo-Cardio-Facial Syndrome
- National Vitiligo Foundation
- Von Hippel Lindau Syndrome, (VHL)
Velo-Cardio-Facial Syndrome
Educational Foundation22q and you newsletter: Published by the Children's Hospital of Philadelphia
VHL Family Alliance
Von Hippel Lindau Syndrome Homepage: at the University of Kansas
- Wegener's Granulomatosis Support Group, Inc.
- Williams Syndrome
- Wilson's Disease Association
- Wolf-Hirschorn Syndrome: 4p- Parent Network Homepage
Williams Syndrome
- Canadian Association Williams Syndrome U.S. AssociationComprehensive Williams Syndrome Home Page: by the Williams Syndrome Foundation
- X-linked Myotubular Myopathy Resource Group
- Xanthinuria Deficiency: Purine Research Society
- Xeroderma Pigmentosum Society Inc.
- If any of these links change, send email to starwalker@snowcrest.net with the new link.