Community Support

  • Family Voices Local and national links for parent support groups and legislative news. The publication list has a number of helpful brochures.
  • Family Education Network has everything you need to know about sending your child to school.
  • The Individuals with Disability in Education Act (IDEA) addresses your child’s rights in school.
  • PACER Parent Advocacy Coalition for Educational Rights will fill in where the previous two sites may have left off.

Financial Resources

  • The Child Health Insurance Program (CHIP) is a partnership between state and federal goverments to provide health insurance for children from working families with incomes too high too qualify for Medicaid but to low to afford private coverage.
  • Health Hippo provides hundreds of links to policy and regulatory information related to health care.
  • Center for Medicare & Medicaid Services (CMS) is the federal agency which manages Medicare, Medicaid and Child Health Insurance programs. Click on the information clearinghouse section for a list of HCFA publications.
  • Social Security Administration online answers a lot of questions about benefits, who qualifies for benefits as well as local offices.
  • Department Of Regulatory Agencies – Contact your state department for any additional information. For example Colorado offers the following:, a great online brochure “What Happens When Your Health Insurance Says No”.
  • Family Voices Publication List “Managed Care for Children with SHCN” is a wonderful brochure explaining managed care as well as what kind of questions to ask about your insurance coverage.

Medical Information

  • National Medical Home Portal is one of the best organized sites with information on education about your child’s chronic condition.
  • Rare Genetic Diseases in Children A well organized site with links on financial, educational, and medical resources for children with genetic disease.
  • RxList is an online pharmacy database.

Resources for Parents, Siblings and Patients


4 Medical Park Drive
Suite C
Pomona, NY 10970
United States