Birth Trauma, Special Needs, and Disability Support Organizations

Cerebral Palsy, HIE, learning and developmental disabilities, and others

Cerebral Palsy Support Organizations

  • United Cerebral Palsy: UCP provides employment guides, public policy information, housing help, transportation assistance, education information, and much more. UCP has affiliate locations in each state.
  • The Cerebral Palsy Foundation: The CP Foundation addresses the moment of impact, or the time at which interventions have the power to change lives. They also connect medical researchers with innovators in media and technology to promote new cerebral palsy research.
  • CP Daily Living: A collection of journals and other resources created to assist people with cerebral palsy and their families. They offer information on daily living, support and planning, adaptive needs, conditions associated with CP, and more.
  • American Academy of Cerebral Palsy and Developmental Medicine: An academy of health professionals providing scientific education and promoting research in a broad range of disabilities. They host events, provide resources, and create publications.
  • Special Needs and Medically Complex Kiddos BabyCenter Forum: An online forum for parents of children with special needs.
  • Coping with HIE/CP: An open Facebook group for parents of children with HIE and/or cerebral palsy.

HIE Support Organizations

  • Hope for HIE: Hope for HIE is a multinational organization that provides support for families impacted by hypoxic-ischemic encephalopathy (HIE). They promote education and awareness about HIE through resources, parent forums and support groups, events, and more.
  • Newborn Brain Cooling Facebook Group: A Facebook support group for parents of kids with HIE or with hypothermia therapy (brain cooling) experience. This group is private, but parents of children who have had hypothermia therapy are encouraged to request to join it.
  • BabyCenter HIE Parent Forum: An online forum for parents of children with HIE or related disabilities.
  • Coping with HIE/CP: An open Facebook group for parents of children with HIE and/or cerebral palsy.

Epilepsy and Seizure Support Organizations

  • The Epilepsy Foundation: The Epilepsy Foundation supports the health and well-being of individuals with epilepsy through community education, advocacy, collaborative efforts, research, epilepsy management information, and social opportunities.

Pregnancy and Infant Loss Support Organizations

  • Star Legacy Foundation: A community of families, medical professionals, advocates, researchers, and others who are devoted to preventing stillbirth and ensuring optimal care for parents in instances of stillbirth.
  • Mommies Enduring Neonatal Death (M.E.N.D.): A non-profit organization that is dedicated to supporting families who have lost a baby through miscarriage, stillbirth, or early infant death.
  • Now I Lay Me Down to Sleep: Professional photographers who are trained to capture beautiful portraits for families facing stillbirth or neonatal death to honor their babies.
  • Skyler’s Gift Foundation: A group that raises funds to support families who have lost an infant as a result of prematurity. They also offer counseling and mental health services.

Premature Birth Support Organizations

  • Graham’s Foundation: A support group that provides care packages, parent mentors, online communities, advocacy, research, and other supportive services for families of premature babies.
  • March of Dimes: An organization primarily focusing on premature birth, birth defects, and infant mortality. A large part of the website’s aim is to provide key information about these concerns to expecting and new parents so that they can know what health problems to look for in their premature babies.
  • PreemieWorld: A website that offers videos, books, and other tools to help educate and serve parents and professionals caring for premature babies.
  • What to Expect: Moms of Preemies Forum: An online discussion forum for parents of premature babies to exchange information and resources.
  • A website that offers information, resources, advice, product recommendations, and other tools for parents of premature babies.
  • Miracle Babies: A nonprofit that was founded to support NICU families. They have a family assistance program which provides financial support to low-income families whose babies are in the NICU.
  • Delayed Darlings BabyCenter Forum: An online forum for parents of children with problems related to being born premature.
  • Hand to Hold: A nonprofit organization that matches seasoned parents of preemies with parents in need of support with a peer-to-peer relationship.

General NICU Support Organizations

  • Project Sweet Peas: A group dedicated to empowering and supporting families of babies in the NICU and inspiring hope in those who have suffered pregnancy or infant loss.
  • NICU Helping Hands: An organization that provides education and support to families with babies in the NICU, families transitioning from life in the NICU, and families suffering from pregnancy or infant loss.
  • Ronald McDonald House: The RMHC provides family-centered care and treatment, including  housing for families of children who are hospitalized, family rooms in hospitals, grants, and care mobiles that provide health education and services.
  • Peekaboo ICU: A website focused on parenting and family care in the NICU. It provides educational resources on premature babies, information on services in the NICU, and support for the emotional health of parents in the NICU.
  • Mikayla’s Grace: A group focused on providing support. They supply NICU care packages to families of babies in the NICU, Angel memory boxes to families who have suffered pregnancy or infant loss, and other gifts.
  • Snoedels: Dolls made to hold the scent of the mother and father to help soothe babies in the NICU.
  • National Perinatal Association: NPA provides educational opportunities, advocacy, and collaboration in the area of perinatal health care and achieving positive outcomes for infants.

Autism Support Organizations

  • Autism Women’s Network: A support group for autistic women and girls of all ages that offers advocacy, community, and resources.
  • National Autism Association: A group that responds to the urgent needs of individuals with autism with helpful programs like emergency checklists, wandering prevention services, and other safety tools.

Down Syndrome Support Organizations

  • National Association for Down Syndrome (NADS): The oldest organization in the country serving individuals with Down syndrome, NADS provides conferences, seminars, parent support, resource referrals, public speakers, retreats, and other services.
  • National Down Syndrome Society (NDSS): An organization that strives to help improve the quality of life of individuals with Down syndrome through advocacy, support, and community involvement.
  • Global Down Syndrome Foundation: An informative website that offers resources, education, involvement opportunities, and lists of Down syndrome resources by location.

Intellectual and Developmental Disability (I/DD) Support Organizations

  • The Arc: The Arc supports individuals with intellectual and developmental disabilities (I/DD) and their families. They achieve this goal by supporting government advocacy at the local, state, and national levels, promoting autonomy and self-determination, providing training for parents and professionals, and offering many more services to those in need.
  • American Association on Intellectual and Developmental Disabilities (AAIDD): An interdisciplinary organization that promotes advancements in research, improved policies, and support for individuals with intellectual and developmental disabilities.

Learning Disabilities Support Organizations

  • Learning Disabilities Association (LDA) of America: The Learning Disabilities Association strives to improve the lives of those with learning disabilities and their families by offering support, advocacy, research, and tools specific to occupation (educators, parents, professionals, etc.).
  • National Center for Learning Disabilities (NCLD): An organization dedicated to supporting children and adults with learning and attention issues through advocacy and empowerment.
  • LD OnLine: An informative website geared towards assisting educators to better serve students with learning disabilities and ADHD.
  • Understood: An organization that provides information, support, and resources for parents of children with learning and attention issues. They strive to help these children achieve their full potential.

Other Disability Support Groups and Organizations

  • Special Needs Alliance: An organization made up of attorneys who serve individuals with disabilities. They provide information about laws, trusts, wills, financial planning, financial programs, insurance, entitlement, and many other services.
  • Parent to Parent USA (P2P): Offers parent-to-parent support for families with children who have special needs or disabilities. They match experienced parents with parents looking for support and develop services in response to apparent needs.
  • Disabilities-R-Us: An online community offering chat rooms, resources, and forums to individuals with physical disabilities.
  • Special Olympics: The world’s largest sports organization for individuals with intellectual disabilities.
  • BabyCenter Forums, such as:
  • Family Voices: A group that strives to improve health care programs and policies to serve individuals with special needs and disabilities.
  • Parents Helping Parents: Information on family, community, and support services available to parents whose children have special needs. Parents are able to communicate services and supports to one another.
  • Federation for Children with Special Needs: A group that provides information and support to parents, caregivers, and communities of individuals with special needs and disabilities. They provide training and professional development tools on their website.
  • Center for Parent Information and Resources (CPIR): Family-friendly information and resources for parents of children with disabilities.