Medical Genetics
Resources
Links

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University of Saskatchewan Genetics (website)

Support Group Resources (grouped below)

Websites for Health Professionals (grouped below)

Support Group Resouces

Saskatchewan Support Group Contacts

• Kabuki Syndrome Network
  Dean and Margo Schmiedge
  8060 Struthers Cres.
  Regina, SK
  S4Y 1J3
  1-306-543-8715
  Email: margot@kabukisyndrome.com
  Website: www.kabukisyndrome.com
  
  
• Klinefelter Contact
  Simone Denis has a son with Klinefelter and is available to talk to those who are looking for information and support.
  Email: smdenis@sasktel.net
  
  
• Little People of Saskatchewan
  1228 Henlease Ave.
  Moose Jaw, SK
  S6H 3V9
  Email: Gracie.Grett@sk.sympatico.ca
  Email: Dautet@saskpower.sk.ca
  Website: see Skeletal Disorders below
  
  
• Saskatchewan Rett Syndrome Association
  Delene Carmen
  149 Woodland Ave
  Buena Vista, SK
  S2V 1B4
  1-877-774-7388 (RETT)
  1-306-729-4899
  Website: www.rett.ca
  

Other Resources

• Androgen Insensitivity and Intersex
  Androgen Insensitivity Support Group: www.medhelp.org/www/ais/
  
  
• Arthritis and Joint Pain
  The Arthritis Society of Canada: www.arthritis.ca
  
  
• Ataxia
  National Ataxia Foundation: www.ataxia.org
  
  
• Autism
  Exploring Autism: www.exploringautism.org
  Autism Treatment Services of Canada: www.autism.ca
  
  
• Birth Defects
  March of Dimes: www.modimes.org
  
  
• Bleeding Disorders
  Canadian Hemophilia Association: www.hemophilia.ca
  
  
• Blindness
  The Canadian National Institute for the Blind: www.cnib.ca
  
  
• Cancer
  Canadian Cancer Society: www.cancer.ca
  Facing Our Risk of Cancer Empowered: www.facingourrisk.org
  
  
• Chromosome Abnormalities
  Support Organizations for Trisomy 18, 13 and related disorders: www.trisomy.org
  The Turner Syndrome Society: www.turner-syndrome-us.org
  Canadian 47,XXY/Klinefelter: www.47xxy.org
  
  
• Cleft Lip and/or Cleft Palate
  Cleft Palate Foundation: http://www.cleftline.org/
  
  
• Craniofacial
  Children's Craniofacial Association: www.ccakids.com
  
  
• Cystic Fibrosis
  Canadian Cystic Fibrosis Foundation: www.ccff.ca
  
  
• Deafness
  Canadian Association for the Deaf: www.cad.ca
  
  
• Death of a Child
  MISS Foundation: www.misschildren.org
  Compassionate Friends: www.compassionatefriends.org
  
  
• Dermatology
  Dermweb: www.derm.ubc.ca
  
  
• Diabetes
  Canadian Diabetes Association: www.diabetes.ca
  
  
• Down Syndrome
  Canadian Down Syndrome Society: www.cdss.ca
  
  
• Endocrine and Metabolic Disorders
  National Instutute of Diabetes, Digestive and Kidney Disorders: www.niddk.nih.gov
  Juvenile Diabetes Research Foundation: www.jdf.org
  
  
• Epilepsy
  Epilepsy Canada: www.epilepsy.ca
  
  
• Facial Differences
  About Face: www.aboutfaceinternational.org
  
  
• Fetal Alchohol Syndrome
  National Institute on Alcohol and Alcoholism: www.niaaa.nih.gov
  
  
• Fragile X
  The National Fragile X Foundation: www.fragilex.org
  Fragile X Research Foundation of Canada: www.fragilexcanada.ca
  
  
• Genetic Testing
  US Department of Health and Human Services: www.accessexcellence.org/AE/AEPC/NIH/index.html
  
  
• Grief
  Griefworks: www.griefworks.com
  
  
• Growth Hormone
  Human Growth Foundation: www.hgfound.org
  
  
• Heart Defects
  The Congenital Heart Information Network: www.tchin.org
  Heart And Stroke Foundation of Canada: www.heartandstroke.ca
  
  
• Hemochromatosis
  Canadian Hemochromatosis Society: www.cdnhemochromatosis.ca
  
  
• Hemoglobinopathies
  Cooley's Anemia: www.thalassemia.org
  
  
• Huntington
  Huntington Society of Canada: www.hsc-ca.org
  
  
• Kidney Problems
  Polycystic Kidney Disease Foundation: www.pkdcure.org
  
  
• Limb Differences
  Limb Differences: www.limbdifferences.org
  
  
• Mental Illness
  National Alliance for the Mentally Ill: www.nami.org
  
  
• Mental Retardation, Learning Disabilities, Developmental Delays
  Child Neurology Society: www.childneurologysociety.org
  Learning Disabilities Association of Saskatchewan: www.ldas.org
  
  
• Metabolic Disorders
  Children Living with Inherited Metabolic Diseases: www.climb.org.uk
  
  
• Miscarriages/Stillbirths/Ectopic Pregnancies
  Helping After Neonatal Death (HAND): www.handonline.org
  
  
• Muscle Problems
  Muscular Dystropy Association of Canada: www.mdac.ca
  
  
• Neural Tube Defects
  Spina Bifida and Hydrocephalus Association of Canada: www.sbhac.ca
  
  
• Neurofibromatosis
  The National Neruofibromatosis Foundation, Inc.: www.neurofibromatosis.org
  
  
• Neurological Disorders
  National Institute for Neurological Disorders and Strokes: www.ninds.nih.gov
  
  
• Premature Menopause (before 40 years)
  EarlyMenopause: www.earlymenopause.com
  
  
• Pregnancy Affected
  Waiting With Love: www.erichad.com/wwl
  
  
• Rare Disorders
  Canadian Organization for Rare Disorders: www.cord.ca
  
  
• Skeletal Disorders (short stature, tall stature, dwarfism, fractured bones, scoliosis)
  Little People of America: www.lpaonline.org
  
  
• Termination of Medically Affected Pregnancies
  A Heart Breaking Choice: www.aheartbreakingchoice.com

Websites for Health Professionals

• American College of Medical Genetics: www.acmg.net
  Educational resources and policy statements on clinical genetics.

• Canadian Directory of Genetic Support Groups: www.lhsc.on.ca/programs/medgenet/index.htm
  Maintained by London Health Sciences Center, this website includes a list of support groups, both Canadian and International, for various genetic conditions.

• Center for Disease Control: www.cdc.gov/genomics/default.htm
  This site provides information about human genomic discoveries and how they can be used to improve health and prevent disease. It also provides links to CDC wide activities in public health genomics.

• Canadian Association of Genetic Counsellors: www.cagc-accg.ca
  Listing of genetics centers across Canada.

• Canadian Organization for Rare Disorders: www.cord.ca
  Provides information on over 6,000 rare disorders. Through a network system, CORD links individuals and families with others who have the same rare disorders.

• Family Village: www.familyvillage.wisc.edu
  This is an extensive website which lists resources for many genetic and non-genetic conditions that can be used by physicians and patients.

• GeneTests: www.genetests.org
  This website contains excellent summaries of many genetic conditions under the heading GeneReviews.

• Genetic Alliance: www.geneticalliance.org
  This website contains summaries of various genetic conditions as well as support group contacts.

• Genetic and Rare Conditions Site: www.kumc.edu/gec/support
  Maintained by the University of Kansas Medical Center, this website provides a list of several common genetic conditions including information on lay advocacy and support groups, and genetic conditions/birth defects for professionals, educators, and individuals.

• March of Dimes Website: www.modimes.org
  Contains thorough Information on pregnancy, teratogens, and a variety of birth defect, including printable "Fact Sheet" on various topics of interest to physicians and patients alike.

• National Cancer Institute: www.cancer.gov
  Thorough information on cancer diagnosis, treatments and clinical trials.

• National Center for Biotechnology Information: www.ncbi.nlm.nih.gov
  Contains Online Mendelian Inheritance in Man (OMIM), a catalogue of human genes and genetic disorders, with links to literature references and gene maps. Also contains PubMed (a search engine for locating specific articles in current medical literature).

• Organization of Teratology Information Services (OTIS): www.otispregnancy.org
  Comprehensive resource for medical information on prenatal exposures. Provide risk assessment information on known and potential reproductive risks.