St. Clair Resources
National center dedicated to improving health care insurance and financing for Children and Youth with Special Health Care Needs (CYSHCN).
The PKU Organization of Illinois provides resources and support to teens, adults and families with PKU and 16 allied disorders.
Their website includes information about understanding and managing phenylketonuria (PKU), diet, local resources, events, what to expect at different life stages and a PKU binder toolkit.
The National PKU alliance provides information including the latest research, a guide for new parents, educational videos, cooking and food, personal stories, scholarships, and legislation and policy.
Individuals impacted by Phenylketonuria (known as PKU) may also download the PKU Handbook, a guide to help understand, organize information and manage PKU from diagnosis to adulthood.
LifeLine Pilots is a non-profit group providing free air transportation to patients seeking a second opinion or in need of treatment at a clinic far from home for non-emergency medical needs.
The organization serves individuals who may not be able to travel long distances any other way or have financial or health-related needs. Volunteer pilots fly passengers in need within a 10 state region. Lifeline Pilots also works with other volunteer pilot organizations to arrange flights beyond their service area.
If you have questions or need to determine if you qualify for services, call 800-822-7972 or fill out the mission request form.
Illinois Assistive Technology Program
The Illinois Assistive Technology Program (IATP) provides expertise in assistive technology and accessible information technology to all Illinois residents of all ages with disabilities and/or health conditions including family members, friends and caregivers.
IATP provides assistive technology demonstrations and allows people to see, try and borrow devices before making a purchasing decision. IATP also allows people to donate or obtain gently used assistive technology devices.
IATP also offers classes and help in finding the right AT devices for your needs:
- Tech Kitchen offers cooking classes in a home-style kitchen showcasing accessibility and adapted tools. Classes are for individuals 14 and up with any disability.
- Smart Home Technology features a five-room interactive Smart Home display highlighting home automation. Experts in assistive technology can discuss your needs and help you compare different AT devices. This program focuses on serving individuals receiving services from the Illinois Department of Human Services, Division of Rehabilitation Services (IDHS-DRS).
- IATP Makers provides custom AT devices and open-source 3D printer files for Illinois residents.
Equip for Equality is an independent agency whose primary goal is protecting the civil and human rights of citizens with disabilities.
Equip for Equality offers assistance that includes:
- Self-advocacy assistance
- Legal services
- Monitoring
- Training
Americans with Disabilities Act (ADA)
Information and technical assistance on the Americans with Disabilities Act.
NORD: National Organization for Rare Disorders
The National Organization for Rare Disorders (NORD) offers support, information and a variety of events for clinicians, researchers, patients and families affected by rare diseases.
NORD’s Resource Center provides patients and caregivers with free webinars, fact sheets, infographics, links to support and advocacy groups, and referrals for many rare disorders.
NORD’s RareCare Program website provides a list of financial assistance programs that can help patients obtain life-saving or life-sustaining medication they could not otherwise afford.
NORD’s State Resource Center contains local, state and national organizations listed by state or by topic offering free or low-cost services for people impacted by rare diseases.
ComeUnity is a parent support website with resources on parenting children with special needs, adoption, child development and multiple lists of groups and organizations providing information on specific topics or areas.
Visit www.comeunity.com/index.html.
PACER Center is a parent training and information center for families of children and youth with all disabilities from birth to young adults. It serves families across the nation.
Parents can find publications, workshops and other resources to help make decisions about education, vocational training, employment and other services for their children with disabilities.