The National Phenylketonuria (PKU) Alliance (NPKUA) provides help with understanding and managing PKU from diagnosis to adulthood. NPKUA resources include a New Parent Support Kit, a Kindergarten Kit for children entering kindergarten, a downloadable PKU Binder Toolkit, guides for educators and information on the latest treatments, insurance coverage and terms, a mentor program, cooking and food, research grants and more.

NPKUA hosts “Community Call.” These monthly peer support groups offer a place for sharing and connecting with others who understand the unique challenges of living with PKU. Please see the events calendar on NPKUA’s website for meeting times and other details for each of the following groups:

• Caregivers of children ages 0 to 3
• Caregivers of children ages 3 to 12
• Caregivers of teens ages 13 to 17
• Adults with PKU ages 18+
• Adults with PKU ages 40+

This online directory can be used to locate providers serving Illinois children. Search by specialty, search by services, or search by city or county where you wish to obtain care.

Clearinghouse is a federally funded information and referral service for children ages 0-21 years who are deaf-blind.  Site provides access to a broad spectrum of information at no cost.

All types of camps are listed in this camp directory.  The directory includes special needs camps, residential camps, day camps and more.

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.

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.

Information about allergies and asthma. You can find out the pollen and spore counts for the area in which you live or plan to travel to.

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

CHIP, a state program, to provide health insurance to residents who due to existence/history of a medical condition, are unable to acquire insurance.

Bright Futures is a national child health initiative focused on prevention and health promotion for infants, children, adolescents and their families.

The Bright Futures website provides a number of resources for children, teens and families and information to help families build a strong partnership with their healthcare providers.