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+

The Service Provider Identification & Exploration Resource (SPIDER) is an online directory that can be used to locate providers serving Illinois children. Search options include specialty, services, language, age, and the city or county where you wish to obtain care.

The National Center on Deafblindness (NCDB) is a national technical assistance center that works with state deafblind projects and other partners to improve educational outcomes and quality of life for children ages 0 -21 who are deafblind and their families. NCDB focuses on national initiatives and provides resources in key areas, including:

• Identification and referral
• Family engagement
• Transition to adulthood
• Factsheets, websites, articles, videos and other resources
• Increasing availability of qualified early intervention (EI) providers, teachers and service professionals
• State Deafblind projects

If you have any questions or need help, please fill out the online form on NCDB’s website.

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.

For questions, visit the contact page on IATP’s website.

The American Academy of Allergy, Asthma and Immunology (AAAAI) offers information about allergies and asthma, including a drug guide, a glossary of terms, videos, and more. AAAAI also provides a tool to help locate an allergist/immunologist in your area and find out local pollen and spore counts for regions in which you live or plan to travel.

AAAAI provides information and helpful tools for the public, including:

• An Allergy, Asthma & Immunology Glossary
• A video library
• Myths in Allergic Diseases

For questions, please contact AAAAI at info@aaaai.org or (414) 272-6071.

Equip for Equality‘s mission is to advance the human and civil rights of children and adults with disabilities. It is the federally mandated, governor-appointed protection and advocacy organization for the state of Illinois. It works to remove barriers in education, employment, housing, transportation and government services for Illinois residents and create model programs for other organizations around the country.

Equip for Equality offers assistance in areas including:

• School and education rights
• Employment rights
• Fully participating in the community and discrimination
• Leaving residential facilities
• Legal services and more

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.

The Transition Coalition provides professional development tools and technical assistance to professionals and families supporting students with disabilities in transition to adulthood planning. Resources include webinars, on-line training modules, study guides and free publications.