National Resources

PWSA USA: PWSA (USA) was organized in 1975 to provide support for individuals, families, professionals and organizations and to be a resource for education and information about PWS. A full 80% of our budget goes to funding programs to benefit PWS, including research, medical, and crisis & family support.

FPWR: The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. High-quality research will lead to more effective treatments and an eventual cure for this disorder. By working together, we intend to free our loved ones from the burdens of PWS, allowing them to lead full and independent lives.

The Children’s Institute: The Center for Prader-Willi Syndrome at The Children’s Institute of Pittsburgh is the world’s only comprehensive, hospital-based inpatient program for medical, behavioral and rehabilitation management of both children and adults with Prader-Willi syndrome (PWS). Our program uses an interdisciplinary team of physicians, nurses, dietitians, occupational, physical, speech/language and recreational therapists, psychologists and teachers.

Latham Centers: A locally, nationally and internationally acclaimed organization dedicated to transforming and enhancing the lives of people with complex special needs.  From a residential school for children and community based homes for adults, to supported, independent and shared living opportunities, Latham Centers offers comprehensive and integrated care and a path forward for the most vulnerable individuals.

The Mac Pact: Whether you are a parent, grandparent, sibling, caregiver or friend of someone with Prader-Willi Syndrome (PWS), we are here to help. Our goal is to help families find useful information, connect with other families and assist during this new journey.

TREND: TREND is an information sharing platform where communities of patients suffering from chronic diseases, their caregivers and medical professionals can track and share real-time health information in order to collectively evaluate the effectiveness of therapies, diet and other interventions.

National Organization of Rare Diseases: NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Clinical Trials: is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. Learn more About Clinical Studies and About This Site, including relevant History, Policies, and Laws.


Local Resources

Connecticut Birth to Three: The Mission of the Birth to Three System is to strengthen the capacity of families to meet the developmental and health-related needs of their infants and toddlers who have delays or disabilities. This is a state program operating under the requirements of Part C of the federal Individuals with Disabilities Education Act.

Connecticut Parent Advocacy Center:  CPAC is a statewide nonprofit organization that offers information and support to families of children with any disability or chronic illness, age birth to 26.  The Center is committed to the idea that parents can be the most effective advocates for their children, given the confidence that knowledge and understanding of special education law and its procedures can bring.

Connecticut Special Olympics: Special Olympics Connecticut provides year-round sports training and competitions for over 14,000 athletes (individuals with intellectual disabilities) and Unified Partners (individuals without intellectual disabilities who are the athletes’ teammates).
In addition to its traditional sports programs for individuals with intellectual disabilities, the Special Olympics Unified Sports® program brings athletes with and without intellectual disabilities together to play sports, gain physical fitness and develop friendships. Special Olympics Unified Sports® is offered in communities across the state, for individuals of all ages.

Oak Hill: Connecticut’s largest provider of services to people with disabilities.  Oak Hill provides a full range of services to people with disabilities. We help all ages, from newborns to seniors. And our experienced staff covers the needs of every intellectual, developmental and physical disability.

NEAT: New England Assistive Technology at Oak Hill:  Since NEAT was established in 2002, they have served tens of thousands of people every year through their Equipment Restoration Center (ERC), resource center, lending library, and assistive technology workshops .  Resources are available for the entire community; including disabled persons, their family members, educators, clinicians, therapists, healthcare professionals, disability advocates, employers and business owners.

Connecticut Department of Social ServicesConnecticut’s DSS offers many programs for people with disabilities.  Resources include health and medical, employment and social work services.

Connecticut Department of Developmental Services:  Connecticut’s DDS is a resource to promote meaningful opportunities for individuals, making community connections and lifelong plans.

Department of Rehabilitation Services:  The Bureau of Rehabilitation Services (BRS) provides vocational rehabilitation services to assist Connecticut residents with significant disabilities to find and keep employment.  The Corporation for Independent Living is a statewide funding program designed to modify housing for people with physical disabilities.

Department of Mental Health and Addiction Services:  Connecticut’s DMHAS is a health care agency whose mission is to promote the overall health and wellness of persons with behavioral health needs through an integrated network of holistic, comprehensive, effective and effectiveness services and supports that foster dignity, respect, and self-sufficiency in those they serve.

The Kennedy Center:  The Kennedy Center, a private, community-based rehabilitation organization, actively responds to needs of persons with disabilities by offering innovative, comprehensive community services to persons with disabilities and special needs, from birth to senior years.

Center for Children with Special Needs:  The Center for Children with Special Needs & The Center for Independence is an interdisciplinary clinic specializing in the diagnosis, evaluation, and treatment of children, adolescents, and adults with complex developmental disabilities.

Share this: