Cardio-Facio-Cutaneous Syndrome Support Network
http://www.cfcsyndrome.org/

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 617-355-6329.
http://www.childrenshospital.org/centers-and-services/programs/a-_-e/cardiovascular-genetics-program

Massachusetts General Hospital, Pediatric Genetics Program
To schedule an appointment, call 617-726-1561.
http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1632

Children's Cardiomyopathy Foundation, Inc.
http://www.childrenscardiomyopathy.org

Danon Disease
http://www.danondisease.org

Hypertrophic Cardiomyopathy Association
www.4hcm.org

Sudden Arrhythmia Death Syndromes (SADS) Foundations
http://www.sads.org/

The Cardiomyopathy Association
http://www.cardiomyopathy.org/

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                                                                                                                                                                         https://www.brighamandwomens.org/heart-and-vascular-center/diseases-and-conditions/cardiovascular-genetic-diseases          

Children's Hospital Boston, Cardiovascular Genetics Program
To schedule an appointment, call 617-355-6329.                                                                                                                                                                                                 http://www.childrenshospital.org/centers-and-services/programs/a-_-e/cardiovascular-genetics-program

Children's Hospital Boston, Cardiomyopathy Program
To schedule an appointment, call 617-355-6329.                                                                                                                                                                                       http://www.childrenshospital.org/Centers-and-Services/Programs/A-_-E/cardiomyopathy-program

Sensorineural hearing loss

American Society for Deaf Children
http://www.deafchildren.org

Boys Town National Research Hospital
http://www.boystownhospital.org/pages/default.aspx

The Decibels Foundation
http://www.decibelsfoundation.org

The Harvard Medical School Center for Hereditary Deafness
http://hearing.harvard.edu/

Hearing 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.gov

National Deaf Children's Society
http://www.ndcs.org.uk/

National Institute on Deafness and Other Communication Disorders: Auditory Neuropathy
https://www.nidcd.nih.gov/health/auditory-neuropathy

Self Help for Hard of Hearing People
http://www.hearingloss.org/

United Mitochondrial Disease Foundation
http://www.umdf.org/

Usher Syndrome

A Guide to Visual Disabilities: How Colleges Help Visually Impaired Students Succeed
http://www.affordablecollegesonline.org/colleges-helping-visually-impaired-students/

Australian Deaf-Blind Council:
http://deafblind.org.au/

Boys Town National Research Hospital: Usher Syndrome Information
http://www.boystownhospital.org/research/molecularstudies/Pages/UsherSyndrome.aspx

The Coalition for Usher Syndrome
http://www.usher-syndrome.org

The Foundation Fighting Blindness
www.blindness.org

The National Consortium on Deaf-Blindness
http://nationaldb.org/
 
National Institute on Deafness and Other Communication Disorders: Usher Syndrome
https://www.nidcd.nih.gov/health/usher-syndrome

The 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 617-355-4534.

Massachusetts General Hospital, Pediatric Genetics Program
To schedule an appointment, call 617-726-1561.
http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1632

The MAGIC Foundation for Children's Growth
http://www.magicfoundation.org

Partners-Affiliated Clinical Genetics Services for Noonan Syndrome:

Boston Children's Hospital, Cardiovascular Genetics Program
To schedule an appointment,
http://www.childrenshospital.org/Centers-and-Services/Programs/A-_-E/cardiovascular-genetics-program/meet-our-team

Massachusetts General Hospital, Pediatric Genetics Program
To schedule an appointment, call 617-726-1561. 
http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1632

Amyloidosis Support Group
www.amyloidosissupport.com

American Liver Foundation
http://www.liverfoundation.org/

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-BWH
https://www.brighamandwomens.org/heart-and-vascular-center/diseases-and-conditions/cardiovascular-genetic-diseases
 
Brigham and Women's Adult Genetics Program
To schedule an appointment, call 617-732-5666
https://www.brighamandwomens.org/medicine/genetics/genetics-genomic-medicine-service