Group Specific Advocacy

Aicardi Syndrome Foundation
Information and support for families and friends of children diagnosed with Aicardi Syndrome.

American Printing House for the Blind, Inc.
The American Printing House for the Blind (APH) is the world’s largest nonprofit organization creating educational, workplace, and independent living products and services for people who are visually impaired.

Autism Research Institute
Dr. Bernard Rimland’s unassuming storefront office houses the world-renowned Autism Research Institute, which has improved the lives of thousands of children with autism – bringing relief, hope, and even recovery to families worldwide. New information emerges daily about autism and its surrounding issues. ARI works diligently to apply the new research findings toward developing methods of helping autistic children and their families now. ARI provides free and low-cost information to parents, professionals and the media by mail and on its website.

Autism Society of America
The mission of the Autism Society of America is to promote lifelong access and opportunity for all individuals within the autism spectrum, and their families, to be fully participating, included members of their community. Education, advocacy at state and federal levels, active public awareness and the promotion of research form the cornerstones of ASA’s efforts to carry forth its mission.

Autism Speaks
At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

Autism Today
In 1996 Karen Simmons (author, keynote speaker, and businesswoman in autism-related endeavors) had a vision to simplify the information gathering and evaluating process for families dealing with Autism Spectrum Disorders… and Autism Today was the outcome. Autism Today receives over 2 million hits a month which consists of 55,000 unique visitors and 25,000 members. They are from all walks of life, both urban and rural virtually from around the entire planet! These numbers confirm not only that the need for information is vast but also that the information we provide is relevant to the worldwide community! With our broad database of highly interactive members, we are an excellent established vehicle to conduct surveys and find interested participants for research projects and educational training.

Brain Injury Association, Inc.
The mission of the Brain Injury Association of America is to create a better future through brain injury prevention, research, education and advocacy.

Centers for Disease Control – Information from Centers for Disease Control on specific diseases and conditions – arranged alphabetically.

Center for Parent Information and Resources
All the materials found on the CPIR Hub have been created and archived for Parent Centers around the country to help them provide support and services to the families they serve.

Center for FASD Justice & Equity
The center was created to raise awareness and address the complex education, health, and justice issues facing individuals and communities impacted by Fetal Alcohol Spectrum Disorders (FASD). While this project has a national scope, the center is also designed to highlight promising projects and initiatives from the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) that have the potential to be transformative and replicable across the U.S

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.

CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
Our only mission at CHERUBS is to help families affected by CDH by searching for the cause, prevention and best treatments of Congenital Diaphragmatic through research and awareness while supporting the CDH community.

Down Syndrome Education USA
Down Syndrome Education USA is a new nonprofit organization established to create new opportunities for young people with Down syndrome. We are associated with and work closely with Down Syndrome Education International – a leading research, information and education services organization.

The Epilepsy Foundation is a national, charitable organization, founded in 1968 as the Epilepsy Foundation of America. The only such organization wholly dedicated to the welfare of people with epilepsy, our mission is simple: to work for children and adults affected by seizures through research, education, advocacy and service.

Exceptional Parent
Exceptional Parent magazine’s online resource. Providing information, support, ideas, encouragement and outreach for parents and families of children with disabilities, and the professionals who work with them.

Fetal Alcohol Syndrome
FASD United expresses the compelling need to work together via partnerships across public, tribal, and private sector communities, and put it to use to  bridge the gaps between research, policies, practices, and lived experiences to address the extraordinary complexities of FASD and support for those living with it so they can reach their full potential.

Genetic Alliance – Genetic Alliance increases the capacity of genetic advocacy organizations to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions. With a 20-year history as a 501(c)(3) not-for-profit organization, Genetic Alliance is dedicated to improving the quality of life for everyone living with genetic conditions. We are committed to capacity building in all communities. The technical assistance we provide to advocacy organizations results in measurable growth: increased funding for research, access to services, and support for emerging technologies.

Genetic Home Reference – Your Guide to Understanding Genetic Conditions – A Service of the U.S. National Library of Medicine

Genetics and Newborn Screening Information – Illinois Department of Public Health – The purpose of the Illinois Department of Public Health (IDPH) Genetics Program is to provide access to appropriate genetic services for any family with concerns about an inherited condition, and to increase awareness of services provided by the program among health care providers and consumers.

Global Genes
Global Genes is committed to providing information, resources and connections to all communities affected by rare diseases.

Making Sense of Your Genes – A Guide to Genetic Counseling – This booklet from Genetic Alliance which is now available on The National Center for Biotechnology Information website provides a consumer-friendly introduction to genetic counseling and its application. The guide includes information on preparing for a genetic counseling session and the different specialties in the field.

Region 4 Genetics Collaborative Family Resources – Information and resources to help families learn more about: •Rare heritable disorders diagnosed through newborn screening •The Medical Home •Medical specialists and laboratories that serve children diagnosed with these very rare conditions and their families •Support resources available to families •Frequently asked questions about genetics services

Hearing Loss Association of America
HLAA provides assistance and resources for people with hearing loss and their families to learn how to adjust to living with hearing loss.

Illinois Hearing Detection & Intervention Program
The purpose of this website is to provide information that will be of interest and benefit to families with children who are deaf or hard of hearing.

Institute on Disability and Human Development – University of Illinois at Chicago
The Institute on Disability and Human Development (IDHD), a University Center for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) is dedicated to promoting the independence, productivity and inclusion of people with disabilities into all aspects of society.

Lovaas Institute
The Lovaas Institute provides behavioral treatment utilizing the principles of applied behavior analysis. The Lovaas Model of Applied Behavior Analysis has undergone rigorous research at UCLA under the direction of Dr. Lovaas, proving its effectiveness in treating children with autism.

NADS National Association for Down Syndrome
NADS is the oldest organization in the country serving individuals with Down syndrome and their families. It was founded in Chicago in 1961 by parents who chose to go against medical advice and raised their children with Down syndrome at home. Their pioneering efforts have made it easier for later generations of individuals with Down syndrome to be accepted by their families and communities, to develop their capabilities, and to work towards independence.

NAMI – National Alliance on Mental Illness
NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. NAMI advocates for access to services, treatment, supports and research and is steadfast in its commitment to raising awareness and building a community of hope for all of those in need.

National Center on Criminal Justice & Disability
NCCJD will become the national focal point for the collection and dissemination of resources and serve as a bridge between justice and I/DD professionals. The NCCJD will pursue and promote safety, fairness and justice for all people with intellectual and developmental disabilities as suspects, offenders, victims or witnesses.

National Center for Learning Disabilities
The National Center for Learning Disabilities (NCLD) works to ensure that the nation’s 15 million children, adolescents and adults with learning disabilities have every opportunity to succeed in school, work and life. NCLD provides essential information to parents, professionals and individuals with learning disabilities, promotes research and programs to foster effective learning and advocates for policies to protect and strengthen educational rights and opportunities.

National Council on Disability
NCD’s overall purpose is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

National Down Syndrome Congress
The mission of the NDSC is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome.

National Down Syndrome Society
The mission of the National Down Syndrome Society is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy.

National Family Association for Deaf-Blind
The National Family Association for Deaf-Blind (NFADB) is a non-profit, volunteer-based family association. Our philosophy is that individuals who are deaf-blind are valued members of society and are entitled to the same opportunities and choices as other members of the community.
NFADB is the largest national network of families focusing on issues surrounding deaf blindness.

National Fragile X Foundation
The National Fragile X Foundation unites the Fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for Fragile X.

Prader-Willi Association, USA
Link to the National Association for Prader-Willi.

RDI connect: guided participation + one step ahead model + dynamic community
Different meanings of the word “relationship” in Relationship Development Intervention provide a gateway to understanding our company mission. We are dedicated to developing tools and training programs that empower parents and helping professionals in the following ways:
*Empowering family relationships, so parents can act as the primary guides of their children’s mental, social and emotional development
*Creating powerful learning relationships, that seamlessly integrate home and school, teachers, parents and students in a productive learning environment
*Building effective minds, through carefully understanding each learner’s unique bio-psycho-social needs
*Designing a dynamic curriculum that engages learners in productive cognitive challenges that stimulate neural integration
*Fostering worldwide, online community relationships of parents and professionals, dedicated to furthering a common mission.

Region 4  Genetics Collaborative Family Resources
Information and resources to help families learn more about:
•Rare heritable disorders diagnosed through newborn screening
•The Medical Home
•Medical specialists and laboratories that serve children diagnosed with these very rare conditions and their families
•Support resources available to families
•Frequently asked questions about genetics services

Rush University Medical Center – Autism Resource Center
An expansive listing of resources for parents and families that include someone with the diagnosis of autism.

Summer Camp Directory – A Free Resource Guide for Families with Children Who Have Special Needs
This directory is a product of the Central Directory of Resources at Family Support Network of North Carolina. It is a listing of summer camps, both day and residential, serving children who have special needs.

TEACCH Autism Program
TEACCH is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders.

The Arc of the United States
The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

The Autism Program of Illinois
The Autism Program is a systems development initiative designed to create and enhance community networks that promote best practice in the diagnosis, treatment and education of children with ASD.

Tourette Syndrome Association – IL Chapter
Tourette is a neurological disorder characterized by tics – sudden, rapid, involuntary movements or vocalizations that occur repeatedly.  The onset of symptoms is before the age of 18.  Symptoms vary widely in intensity throughout one’s lifetime.  Tourette is frequently associated with other disorders including but not limited to Attention Deficit Disorder (ADD or ADHD), Obsessive-Compulsive Disorder (OCD), Anxiety, Depression and Learning Disabilities.

United Cerebral Palsy
UCP’s mission is to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities, through our commitment to the principles of independence, inclusion and self-determination.

United Spinal Association –  Illinois Chapter
The United Spinal Association – Illinois chapter is a 501(c)3 non-profit organization providing information and support resources for people paralyzed by trauma and medical conditions, family members, and health care and related professionals that serve the SCI community. Our office is located in Palos Heights, IL, a suburb of Chicago, but we serve the entire state.