Family Voices, OK

There is TONS of information on their website.

Family Voices is a national grassroots clearing house for information and education about ways to assure and improve health care for children with disabilities and chronic conditions. Our vast network includes more than 40,000 families and friends, a volunteer Coordinator in each state, ten Regional Coordinators, and staff located in New Mexico, Iowa, Illinois, and Massachusetts. This network enables Family Voices to share the expertise and experiences of families with other families and with our professional partners across the country. Our families, Coordinators and staff serve as members of local, state, and national boards and task forces; as staff for state health agencies or parent organizations; as advisors to private and public health systems and research projects... always bringing the family perspective to policy discussions and decisions. As families and friends, we speak with love and knowledge on behalf or our children with special health care needs.