Disease Specific Resources
Listed below are outside resources for some of the genetic diseases tested for at the Laboratory for Molecular Medicine (LMM).
Cancer
Cardio-Facio-Cutaneous Syndrome
Cardiomyopathy
Costello Syndrome
Fabry Disease
Familial Thoracic Aortic Aneurysms and Aortic Dissections (TAAD)
Hearing Loss
Marfan and Loeys-Dietz Syndromes
Noonan Syndrome
Transthyretin Amyloidosis
Cancer
American Cancer Society
http://www.cancer.org/indexAmerican Society of Clinical Oncology
http://www.asco.org/portal/site/ASCOv2Cancer Care
http://www.cancercare.org/Colon Cancer Alliance
http://www.ccalliance.orgNational Cancer Institute
http://www.cancer.gov/cancerinfoThe National Coalition for Cancer Survivorship
http://www.canceradvocacy.org/NINDS Von Hippel-Lindau Disease (VHL) Information Page
http://www.ninds.nih.gov/disorders/von_hippel_lindau/von_hippel_lindau.htmVHL Family Alliance
http://www.vhl.org/
Partners Affiliated Clinical Genetics Services for Cancer:
Brigham and Women's Adult Genetics Program
To schedule an appointment, call 617-732-5666Dana-Farber Cancer Institute
http://www.dana-farber.org/Massachusetts General Hospital, Cancer Center
http://www.massgeneral.org/cancer/Massachusetts General Hospital, Pediatric Genetics Program
To schedule an appointment, call 617-726-1561http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1632
Cardio-Facio-Cutaneous Syndrome
Cardio-Facio-Cutaneous Syndrome Support Network
http://www.cfcsyndrome.org/Children's Craniofacial Association
http://www.ccakids.com/Foundation for Ichthyosis and Related Skin Types
http://www.firstskinfoundation.org/
Partners Affiliated Clinical Genetics Services for CFC syndrome:
Children's Hospital Boston, Cardiovascular Genetics Program
To schedule an appointment, call 617-355-2079
http://www.childrenshospital.org/clinicalservices/Site528/mainpageS528P0.htmlMassachusetts General Hospital, Pediatric Genetics Program
To schedule an appointment, call 617-726-1561http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1632
Cardiomyopathy
American College of Cardiology
http://www.cardiosource.org/acc
Barth Syndrome Foundation
http://www.barthsyndrome.org/english/view.asp?x=1CardioGenomics
http://cardiogenomics.med.harvard.edu/homeChildren's Cardiomyopathy Foundation, Inc.
http://www.childrenscardiomyopathy.orgDanon Disease
http://www.danondisease.orgFamilial Dilated Cardiomyopathy (FDC) Project at Oregon Health & Science University (OHSU):
http://www.fdc.to/Genetic testing in cardiac disease: from bench to bedside
View the Article (pdf)Hypertrophic Cardiomyopathy Association
www.4hcm.orgMedline Plus: Cardiomyopathy
http://www.nlm.nih.gov/medlineplus/ency/article/001105.htmSudden Arrhythmia Death Syndromes (SADS) Foundations
http://www.sads.org/The Cardiomyopathy Association
http://www.cardiomyopathy.org/index.html
Partners Affiliated Clinical Genetics Services for Cardiomyopathy:
Brigham and Women's Hospital, Cardiovascular Genetics Center
To schedule an appointment, call 1-800-MD-TO-BWH
http://www.brighamandwomens.org/Departments_and_Services/medicine/services/cvcenter/genetics/Children's Hospital Boston, Cardiovascular Genetics Program
To schedule an appointment, call 617-355-2079
http://www.childrenshospital.org/clinicalservices/Site528/mainpageS528P0.htmlChildren's Hospital Boston, Cardiomyopathy Program
To schedule an appointment, call 617-355-6329
http://www.childrenshospital.org/clinicalservices/Site1033/mainpageS1033P0.html
Costello Syndrome
Costellokids
http://www.costellokids.com/Costello Syndrome Family Network, Inc.
Email: Sandra@CostelloSyndromeUSA.org
Lisa@CostelloSyndromeUSA.org
Partners Affiliated Clinical Genetics Services for Costello syndrome:
Children's Hospital Boston, Cardiovascular Genetics Program
To schedule an appointment, call 617-355-2079
http://www.childrenshospital.org/clinicalservices/Site528/mainpageS528P0.htmlMassachusetts General Hospital, Pediatric Genetics Program
To schedule an appointment, call 617-726-1561
http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1632
Fabry Disease
Fabry Community
http://www.fabrycommunity.comFabry Support and Information Group
www.Fabry.orgNational Institute of Neurological Disorders and Stroke (NINDS)
www.ninds.nih.gov/disorders/fabrys/fabrys.htmNational Tay-Sachs and Allied Diseases Association, Inc
www.ntsad.org
Partners Affiliated Clinical Genetics Services for Fabry Disease:
Children's Hospital Boston, Cardiovascular Genetics Program
To schedule an appointment, call 617-355-2079
http://www.childrenshospital.org/clinicalservices/Site528/mainpageS528P0.htmlMassachusetts General Hospital, Pediatric Genetics Program
To schedule an appointment, call 617-726-1561
http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1632Brigham and Women's Adult Genetics Program
To schedule an appointment, call 617-732-5666
http://www.brighamandwomens.org/Departments_and_Services/medicine/services/genetics/
Familial Thoracic Aortic Aneurysms and Aortic Dissections (TAAD)
American Heart Association: Aortic Aneurysms
http://my.americanheart.orgBrigham and Women's Thoracic Aortic Aneurysm
http://brighamandwomens.staywellsolutionsonline.com/Library/Encyclopedia/85,P08258
Partners Affiliated Clinical Genetics Services for Familial Thoracic Aortic Aneurysms and Aortic Dissections (TAAD):
Brigham and Women's Adult Genetics Program
To schedule an appointment, call Brigham and Women's Adult Genetics Program
http://www.brighamandwomens.org/Departments_and_Services/medicine/services/genetics/
Hearing Loss
Sensorineural hearing loss
American Society for Deaf Children
http://www.deafchildren.orgAuditory Neuropathy Information Site
http://auditoryneuropathy.com/ANindex.htmlBoys Town National Research Hospital
http://www.boystownhospital.org/pages/default.aspxThe Connexin-Deafness Homepage
http://davinci.crg.es/deafness/The Harvard Medical School Center for Hereditary Deafness
http://hearing.harvard.edu/index.htmHearing Health Foundation
http://hearinghealthfoundation.org/Hereditary Hearing Loss Homepage
http://hereditaryhearingloss.org/Mitomap
http://www.mitomap.org/National Association of the Deaf
http://www.nad.org/National Institute on Deafness and Other Communication Disorders
http://www.nidcd.nih.govNational Deaf Children's Society
http://www.ndcs.org.uk/National Deaf Education Network & Clearinghouse
http://www.gallaudet.edu/clerc_center.html/National Institute on Deafness and Other Communication Disorders: Auditory Neuropathy
http://www.nidcd.nih.gov/health/hearing/neuropathy.aspUnited Mitochondrial Disease Foundation
http://www.umdf.org/Self Help for Hard of Hearing People
http://www.hearingloss.org/
Pendred Syndrome
Pendred/BOR Homepage
http://www.healthcare.uiowa.edu/labs/pendredandbor/pdsBackground.htm
Usher Syndrome
Australian Deaf-Blind Council:
http://deafblind.org.au/Boys Town National Research Hospital: Usher Syndrome Information
http://www.boystownhospital.org/research/molecularstudies/Pages/UsherSyndrome.aspxThe Foundation Fighting Blindness
www.blindness.orgThe National Consortium on Deaf-Blindness
National Institute on Deafness and Other Communication Disorders: Usher Syndrome
http://www.nidcd.nih.gov/health/hearing/usher.aspThe Unique Educational and Services Needs of Children With Deaf-Blindness
http://www.tsbvi.edu/seehear/archive/unique.html
Partners Affiliated Clinical Genetics Services for Hearing Loss:
Children's Hospital Boston, Department of Otolaryngology and Communication Disorders Genetic Counseling Clinic
To schedule an appointment, call 617-355-4534Massachusetts General Hospital, Pediatric Genetics Program
To schedule an appointment, call 617-726-1561
http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1632
Marfan and Loeys-Dietz Syndromes
Canadian Marfan Association
http://www.marfan.caMarfan Association United Kingdom
http://www.marfan-association.org.uk/MedicineNet.com: Loeys-Dietz Syndrome
http://www.medicinenet.com/loeys-dietz_syndrome/article.htmThe National Marfan Foundation
http://www.marfan.org/marfan/Sudden Arrhythmia Death Syndromes (SADS) Foundations
http://www.sads.org/
Partners Affiliated Clinical Genetics Services for Marfan and Loeys-Dietz Syndromes:
Children's Hospital Boston, Cardiovascular Genetics Program
To schedule an appointment, call 617-355-2079
http://www.childrenshospital.org/clinicalservices/Site528/mainpageS528P0.htmlMassachusetts General Hospital, Pediatric Genetics Program
To schedule an appointment, call 617-726-1561
http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1632Brigham and Women's Adult Genetics Program
To schedule an appointment, call 617-732-5666
http://www.brighamandwomens.org/Departments_and_Services/medicine/services/genetics/
Noonan Syndrome
MAGIC Foundation for Children's Growth
http://www.magicfoundation.org/wwwThe Noonan Syndrome Support Group, Inc.
http://www.noonansyndrome.org/
Partners Affiliated Clinical Genetics Services for Noonan syndrome:
Children's Hospital Boston, Cardiovascular Genetics Program
To schedule an appointment, call 617-355-2079
http://www.childrenshospital.org/clinicalservices/Site528/mainpageS528P0.htmlMassachusetts General Hospital, Pediatric Genetics Program
To schedule an appointment, call 617-726-1561
http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1632
Transthyretin Amyloidosis
Amyloidosis Support Group
www.amyloidosissupport.comAmerican Liver Foundation
http://www.liverfoundation.org/The Neuropathy Association
www.neuropathy.org
Please also see Cardiomyopathy Resources.
Partners Affiliated Clinical Genetics Services for Transthyretin Amyloidosis:
Brigham and Women's Hospital, Cardiovascular Genetics Center
To schedule an appointment, call 1-800-MD-TO-BWHhttp://www.brighamandwomens.org/Departments_and_Services/medicine/services/cvcenter/genetics/
Brigham and Women's Adult Genetics Program
To schedule an appointment, call 617-732-5666
http://www.brighamandwomens.org/Departments_and_Services/medicine/services/genetics/
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