Specific Advocacy Organizations & Resources

Autism Spectrum Disorders

Asperger's Network Supports - ANSWER

A network that advocates for community awareness, furthering research, better education and support of individuals and families living with Asperger's Syndrome.  They facilitate support groups for families and acquire funding to support research.

Ausome Family

Ausome Family is a website and corresponding social networking page dedicated to the moms (and dads/grandparents/teachers, etc.) who are determined to create a beautiful, successful life for children who are living with autism.  Their goals include connecting, supporting and inspiring families living with autism in the Twin Cities and beyond!

Autism Advocacy & Law Center

The vision of the firm is to help parents and caregivers meet the needs of their children who have autism or other disabilities.  We seek to accomplish this goal through a variety of methods  that include planning for the future and advocating for funding to meet the current needs of our children -- regardless of how young or old they may be.

Autism Minnesota

Autism Minnesota is a grassroots collaboration of concerned parents and organizations dedicated to expanding autism awareness, promoting activities and events statewide, and advocating for positive legislative change in the State of Minnesota.

Autism Resource Directory - Fraser

The Fraser Autism Resource Directory is a must-have for any family with a child who has an autism spectrum disorder. Updated each year by the experts at Fraser, this comprehensive directory focuses on services available in the Twin Cities metropolitan area.

Autism Resource Guide for Washington County

The purpose of the Autism Resource Guide is to provide relevant information about autism resources near or in Washington County.

Autism Resource Network

The autismshop.com is the online home of the Autism Resource Network, a one-of-a-kind Book and Toy Store, located in Minnesota, that is packed with merchandise and information for individuals with ASD and those who love, care for, and educate them.

Autism Society of Minnesota (AuSM)

The Autism Society of Minnesota is an organization of families, educators, caregivers and professionals committed to supporting individuals with autism spectrum disorders (ASD) through education, support, collaboration and advocacy.

Autism Speaks

Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.

Autism Works

Autism Works is filled with passionate individuals, experienced adults on the Spectrum, and representation from the right mix of health, human services, psychological and corporate services to ensure that each and every high-functioning adult can have the support they need to succeed.  Understanding individual preferences and talents helps Autism Works customize employment for each individual, finding opportunities for employment within the community.

Center for Engaging Autism

Providing young families living on the autism spectrum the information, strategies and support they need to engage fully in their homes, schools and communities. We are dedicated to building bridges between research, practice and everyday life.

Children with Autism Deserve Education (C.A.D.E.)

Children with Autism Deserve Education (C.A.D.E.)  provides support to families affected by autism via grants for autism research, therapy, and medical interventions.  C.A.D.E is a local organization based in Minnetonka, Minnesota.

FIND Network

The FIND Network is where families and individuals can sign up to receive updated information and be part of research on autism spectrum disorders (ASD) and neurodevelopmental disorders (NDD).  The mission is to be a partnership connecting organizations serving the ASD and NDD communities, researchers searching for answers, and people interested in learning about what is currently available in Minnesota.

MCH Library - Autism Spectrum Disorders Knowledge Path

This knowledge path presents resources about autism spectrum disorder (ASD) screening, diagnosis, treatment, care, and impact on family life. It includes tools for health care practices; training; improving state systems and services; research; and finding data and statistics, journal articles, reports, and other materials.

Parenting Asperger's Community

Discover the ULTIMATE collection of parenting help and Asperger's advice that you are ever likely to need. Whatever parenting tips, tricks and techniques that you want for helping your child with Asperger's it's all here for you to access now.

Tony Attwood (Website)

This website is a guide for parents, professionals and people with Asperger's Syndrome and their partners.  In this site you will find issues related to Asperger's Syndrome, resources, resource papers Tony has authored, related topics, and Tony's presentation schedule.

Other Disabilities & Conditions

Anaphylaxis and Food Allergy Association of Minnesota (AFAA)

The AFAA is a non-profit organization whose mission is to educate, advocate and to support those with food allergies.  Membership includes families, doctors, nurses, dieticians, teachers and food personnel.  With over 4,000 associate members, AFAA is the largest state-based food allergy support organization in the U.S.

Angelman Syndrome Foundation

The Angelman Syndrome Foundation is a national organization of families, caregivers and medical professionals who care about those with Angelman Syndrome.  Their mission is to advance the awareness and treatment of Angelman Syndrome through education and information, research, advocacy and support for individuals with Angelman Syndrome, their families and other concerned parties.

CHADD

Children and Adults with Attention-Deficit/Hyperactivity Disorders (CHADD) is the nation’s largest leading non-profit organization serving individuals with AD/HD and their families.

Cri Du Chat - International

CriDuChat.org is a tool for parents, families, teachers and health professionals to learn more about Cri Du Chat.  It is our mission to be the centerpoint of useful and credible information that is not readily available to all because the syndrome is so rare.

Down Syndrome Association of Minnesota

The Down Syndrome Association of Minnesota is the only organization in our region devoted exclusively to the needs of people with Down Syndrome and their families.

Down Syndrome Diagnosis Network

Down Syndrome Diagnosis Network is a group of women from all over the United States who each have a child with Trisomy 21 (Down syndrome) and a great desire to ensure women who receive a DS diagnosis are provided with current information and support.

Epilepsy Foundation of Minnesota

The Epilepsy Foundation of Minnesota provides accessible, effective resources to individuals and families affected by epilepsy.  They lead the fight to stop seizures, find a cure and overcome the challenges created by epilepsy.  The Epilepsy Foundation wants everyone to get motivated, get involved and get the facts regarding epilepsy.

Fragile X Foundation

The National Fragile X Foundation unites the Fragile X community to enrich lives through educational and emotional support, promotes public policy and professional awareness, and advances research towards improved treatments and a cure for Fragile X. 

GiGi's Playhouse

Gigi's Playhouses are Down syndrome awareness and education centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and community.

Klinefelter Syndrome Information and Support

Klinefelter Syndrome is a condition that occurs in men who have an extra X chromosome in most of their cells.  This syndrome can affect different stages of physical, language and social development.  The most common symptom is infertility.

LDA Minnesota

The mission of LDA Minnesota is to help children, youth, and adults with learning difficulties learn successfully, dream of possibilities, and achieve their goals.  LDA Minnesota is the Twin Cities’ leading nonprofit educational agency specializing in learning disabilities for people of all ages.

Madison Claire Foundation

The Madison Claire Foundation was created in the memory of Madison Claire Millington, and dedicated to helping children and families diagnosed with Spinal Muscular Atrophy (SMA) and other life threatening illnesses and disabilities.

Minnesota Brain Injury Alliance

The Minnesota Brain Injury Alliance (formerly Brain Injury Minnesota) provides help, hope and a voice for the 100,000 Minnesotans who live with a disability as a result of brain injury.

Minnesota DeafBlind Project

The Minnesota DeafBlind Project provides technical assistance which supports Minnesota children and youth, birth to 21 years, who have BOTH a vision and hearing impairment.

Minnesota Hands and Voices

Minnesota Hands and Voices is a private not-for-profit program funded by United Way that provides information and support to families of deaf and hard of hearing children.

Minnesota Organization on Fetal Alcohol Syndrome (MOFAS)

The mission of MOFAS is to eliminate disability caused by alcohol consumption during pregnancy and to improve the quality of life for those living with Fetal Alcohol Spectrum Disorders (FASD) throughout Minnesota.  Their vision is a world in which women do not drink alcohol during pregnancy and people living with FASD are identified, supported and valued.  Information on the National Organization on Fetal Alcohol Syndrome can be found here.

Minnesota Statewide Family Network (MSFN)

The Minnesota Statewide Family Network is a statewide non-profit parent-directed organization in Minnesota, whose mission is to expand opportunities and enhance the lives of children with mental health disorders and their families.

National Alliance on Mental Illness (NAMI) of Minnesota

The National Alliance on Mental Illness of Minnesota is a nonprofit organization dedicated to improving the lives of adults and children with mental illness and their families through education, support and advocacy.

International Rett Syndrome Foundation (IRSF)

The core mission of the IRSF is to fund research for treatments and a cure for Rett Syndrome while enhancing the overall quality of life for those living with Rett Syndrome by providing information, programs and services.
Locally, the Midwest Rett Syndrome Foundation funds important research initiatives and promotes wellness and education of families within our community that are affected by Rett Syndrome.

Sotos Syndrome Support Association

Sotos syndrome is a genetic condition causing physical overgrowth during the first years of life. Organized in 1986, the Sotos syndrome Support Association (SSSA) is made up of families and health care agencies throughout the United States and the world.  The SSSA is a nonprofit organization run completely by volunteers.

Turner Syndrome Society, Minnesota Chapter

Turner Syndrome (TS) is a chromosomal condition that describes girls and women with common features that are caused by complete or partial absence of the second sex chromosome.  TS is a variable condition and every girl and woman is unique.  The most common feature is short stature.

United Cerebral Palsy of Minnesota (UCP)

The focus of United Cerebral Palsy of Minnesota is public policy, information and referral, providing augmentative and alternative communication devices, and education for people with cerebral palsy and their families.

Williams Syndrome Association (WSA)

The WSA is the most comprehensive resource for people and families living with Williams Syndrome as well as doctors, researchers and educators.  The WSA provides resources, support and the latest medical information to help children today and throughout their lives.  The WSA is organized into 16 regions across the U.S. and Puerto Rico.  Minnesota is included in the Williams Syndrome Association, Upper Midwest Region.

 

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NORD - National Organization for Rare Disorders

The National Organization for Rare Disorders is dedicated to helping the nearly 30 million Americans with rare disorders, and the organizations that serve them, through programs of education, advocacy, research and patient services.