promote partnerships

NFADB has developed collaborative relationships with many state and national organizations focused on deafness, blindness, and deaf-blindness. Through these relationships, we partner to collaborate on projects, provide referrals and share valuable resources with families. Thank you to the following partners, friends, and financial supporters. Partners with a key icon indicate a partner that is a financial supporter and KEY to our success

American Association of Deaf-Blind (AADB)
The American Association of Deaf-Blind (AADB) is a national consumer organization of, by, and for deaf-blind Americans and their supporters. Their mission is to ensure that all deaf-blind persons achieve their maximum potential through increased independence, productivity, and integration into the community.

CHARGE Syndrome Foundation
The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome and to promote awareness and research regarding its identification, cause, and management. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Most have hearing loss, vision loss, and balance problems which delay their development and communication.

Cornelia de Lange Syndrome Foundation (CdLS) 
Cornelia de Lange Syndrome (CdLS) is a genetic disorder present from birth, but not always diagnosed at birth. It is a congenital syndrome with many disabilities including vision and hearing loss. The Cornelia de Lange Syndrome Foundation is a family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives.

Deaf-Blind National Community of Practice (DB NCOP)
NFADB is a member of the Helen Keller National Center DB NCOP, a collaborative working group of agencies committed to maximizing resources and enhancing services with and for individuals who are deaf-blind. The DB NCOP looks to strengthen relationships among these agencies and increase opportunities for services and supports available on the local and state level to the deaf-blind community across the country.

Global Foundation on Peroxisomal Disorders(GFPD)
The Global Foundation for Peroxisomal Disorders helps families of children diagnosed with a Peroxisomal Biogenesis Disorder (in the Zellweger Spectrum of Disorders) by assisting family members and professionals through educational programs, research, and support services.

Hands and Voices

Hands & Voices is a non-profit, parent-driven organization dedicated to supporting families of children who are deaf or hard of hearing. We are non-biased about communication methodologies and believe that families can make the best choices for their child if they have access to good information and support. Our membership includes families who communicate manually and/or orally. From American Sign Language to cochlear implants, our organization represents people from all different approaches to, and experiences with, deafness or hearing loss. We have local chapters comprised mainly of parents along with professionals. 

Helen Keller National Center (HKNC)
The mission of the Helen Keller National Center (HKNC) for Deaf-Blind Youths and Adults is to enable each person who is deaf-blind to live, work and thrive in his or her community of choice. The Center operates a residential and training facility in Sands Point, New York.  Staff in 12 regional offices also provide information, training, and support in an individual’s home state.

Intervener Website 

Learn about an Intervener.  An Intervener is a person who:

  • Works consistently one-to-one with an individual who is deafblind
  • Has training and specialized skills in deafblindness

An intervener provides a bridge to the world for the student who is deafblind. The intervener helps the student gather information, learn concepts and skills, develop communication and language, and establish relationships that lead to greater independence. The intervener is a support person who does with, not for the student. 

National Association for Parents of Children with Visual Impairments(NAPVI)
The National Association for Parents of Children with Visual Impairments (NAPVI) is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities. NAPVI provides leadership, support, and training to assist parents in helping children reach their potential.

National Center on Deaf-Blindness (NCDB)
The National Center on Deaf-Blindness provides technical assistance and information services to agencies serving children and young adults who are deaf-blind, as well as their families. NCDB has the largest database of information related to deaf-blindness and disseminates (at no cost) information related to children and youth who are deaf-blind (ages 0 to 21 years).

National Coalition on Deafblindness
The National Coalition on Deafblindness was formed in 1987 in response to a need to provide feedback to legislators and policy makers regarding the ongoing needs of children who are deafblind and the reauthorization of Individuals with Disabilities Education Act (IDEA). If you have questions, suggestions, and/or would like to become involved, please sign up for the National Coalition on Deafblindness discussion group.

National Deaf-Blind Equipment Distribution Program (NDBEDP)
The National Deaf-Blind Equipment Distribution Program (NDBEDP), through the iCanConnect program, ensures that every person with combined hearing and vision loss has access to modern telecommunication tools and the training necessary to use them, granting every individual the opportunity to interact with the world as an involved, contributing member of society.

National Task Force on Deaf-Blind Interpreting (NTFDBI)
The National Task Force on Deaf-Blind Interpreting (NTFDBI) is a collaboration among the Registry of Interpreters for the Deaf (RID), the American Association of the Deaf-Blind (AADB) and the National Consortium of Interpreter Education Centers (NCIEC). The mission of this task force is to establish a standard of effective practice to ensure the quality and availability of interpreters for Deaf-Blind people.

Parent to Parent USA - 

Parent to Parent USA (P2P USA) is a national non-profit organization whose mission is to provide emotional and informational support to families of children who have special needs. P2P USA is an alliance of statewide P2P programs, promoting access, quality, and leadership in parent to parentsupport across the country.

Perkins School for the Blind
Since 1829, Perkins has been a national and international leader and resource providing state-of-the-art education and services to infants, toddlers, children, youth, and young adults who are blind, deafblind or visually impaired, including those with additional disabilities, their families, and the professionals who serve them. Their goal is to maximize the potential of each child to lead a proud, productive, and meaningful life in the mainstream of society in the United States and around the world.

Perkins Wonder Baby

WonderBaby.org is dedicated to helping parents of young children with visual impairments as well as children with multiple disabilities. Here you’ll find a database of articles written by parents who want to share with others what they’ve learned about playing with and teaching a blind child, as well as links to meaningful resources and ways to connect with other families.

Ski-HI Institute
The SKI-HI Institute is a unit of the Research and Evaluation Division of the Center for Persons with Disabilities at Utah State University with outreach programs to Utah citizens, and to families and professionals in nearly all 50 states and Canada. The Institute’s primary purpose is to identify and respond to real needs of young children who are deaf/hard of hearing, blind/visually impaired, deafblind, multi-disabled, or who have any special needs. Their principles are based on recognizing the family as the most vital element of a child’s development and understanding the home as the most natural of learning environments.  Ski-Hi has been a leader in developing training for Interveners and for support and training for family members related to Interveners.

Special Kids Network

Special Kids Network is an independent non-profit organization that was created to provide funding for programs that help children and young adults with special needs. Our mission is to create community awareness and raise funds in support of organizations who believe that every child and young adult, regardless of the nature of their background or disability, should be able to enjoy life to its fullest and to participate in the mainstream of their community.

Usher Syndrome Coalition
The Usher Syndrome Coalition is an international organization dedicated to providing information and support to individuals and families living with Usher syndrome. Usher Syndrome is the leading genetic cause of combined vision and hearing loss. The Coalition has the USH Trust – the largest international registry of individuals with Usher syndrome; has access to the latest information from the world’s leading researchers on Usher syndrome; and serves as the bridge between the Usher community and the research community.

Usher Syndrome Coalition Registry

By registering in the USH Trust, you will become part of the largest global network of individuals with Usher syndrome. You will have the opportunity to contribute to the world's understanding of Usher syndrome, will be ensured of receiving information on the latest research, treatments and clinical trials, and will be the first to learn about opportunities to participate in research.

expand your family network

From November 1 through December 31, 2019, NFADB is offering a 25% discount to celebrate our 25th anniversary!

We hope you take advantage of this offer!

become a member of nfadb



Our Partners


Helen Keller National Center

National Center on Deaf-Blindness

Perkins School for the Blind


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OUR MISSION

NFADB exists to empower the voices of families with individuals who are deaf-blind and advocate for their unique needs.

PHONE OR FAX

Phone: 800.255.0411
Fax: 516.883.9060

MAILING ADDRESS

PO Box 1667
Sands Point, NY 11050

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