Resource Directory /

Health Condition and Disability-Specific Resources

  • 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, support and advocacy groups links, and referrals for 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.

    NORD’s free, self-paced online course “From Records to Research: Making Sense of Health Data for Rare Diseases” provides help for understanding health data, research participation and how both contribute to improving treatments and care. The course is available:

  • Northlands Association for Special Recreation (NASR)

    Northlands Association for Special Recreation (NASR) is a cooperative partnership between the Belvidere, Freeport and Rockford Park Districts. NASR programs are open to individuals with disability-related needs including physical, mental and developmental disabilities, mental illness, behavior disorders and visual or hearing impairments.

  • OneSight

    OneSight is a nonprofit committed to ending the global vision care crisis. Through OneSight’s OnSite Voucher Program, eligible patients can receive glasses free of charge. See OneSight’s frequently-asked question page for more details.

  • Options & Advocacy for McHenry County

    Options & Advocacy for McHenry County is a service coordination agency that provides information and referrals, screening, evaluation and assessment, service plans, community education and more for children and families in McHenry County. Its programs include:

    • Child and Family Connections Program, an Early Intervention program
    • Autism Resource Center
    • Helping Us Grow (HUG), a home visiting program
    • Early Childhood Network of McHenry County
    • Play and support groups
    • Stefanie Sullivan Joyful Arts program for teens and young adults with developmental and other challenges
    • Neuro Inclusive Counseling

    For more information, contact Options & Advocacy of McHenry County at (815) 477-4720, Monday through Thursday, from 8 a.m. to 4 p.m., and on Friday from 8:30 a.m. to 12 p.m.

    You can also use the Options & Advocacy of McHenry County’s online form to submit questions and referrals.

  • OSF Autism Pathways

    OSF Healthcare Children’s Hospital of Illinois’  OSF Autism Pathways provides tools, information and resources to help individuals of all ages navigate their autism journey. The OSF Autism Pathways team can help answer questions about treatment options and other concerns. It can also help connect individuals to autism services and supports.

    OSF Autism Pathways’ services and resources include:

    • General autism information and resources
    • Autism diagnostic services
    • Behavioral health, crisis and respite care supports
    • Daily living skills development and transition to adulthood planning
    • Employment and job coaching
    • Family supports and financial planning
    • Social and recreational opportunities
    • Therapeutic interventions

    To refer yourself or your child, please call (844) 910-0770 or (309) 624-4830. You can also fill out the OSF Autism Pathways online form.

  • Parent Institute Lectures for Families of Children With Hearing Loss

    The Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing is a program for parents of young children who have a significant hearing loss. It takes place on the campus of the Illinois School for the Deaf in Jacksonville each June.

    Participating parents attend daily lectures by experts in the field to learn about raising a child with hearing loss. Lecture topics include the Individuals with Disabilities Education Act (IDEA), advocacy, communication options, language, assistive listening devices, literacy and amplification.

    UIC’s Division of Specialized Care for Children (DSCC), a supporter of the Institute, has made these presentations available online so they can benefit more families of children with hearing loss. Visit the 2019 Parent Infant Institute Video Recordings page on the Illinois Early Hearing Detection and Intervention (EHDI) Program website.

  • People First: A Guide to Interacting With People With Disabilities

    The Illinois Department of Human Services’ Division of Rehabilitation Services (IDHS/DRS) is dedicated to empowering people with disabilities in becoming full participants in our society.

    With “People First: A Guide to Interacting with People With Disabilities,” IDHS/DRS provides general etiquette tips and information on people-first language to foster respect and inclusion for people with disabilities.

  • Perkins School for the Blind College Readiness Resource Center

    Perkins School for the Blind College Readiness Resource Center helps students and the many people involved in assisting them prepare for success. Students, families and education professionals can access helpful planning and assessment tools, checklists and resources for going to college, pre-college training programs or heading straight to work.

    The College Readiness Resource Center includes:

    • Resources for families to start planning early
    • Information on the laws that affect the transition from high school to college
    • How to get students ready for life after high school
    • The College Readiness Checklist and Teachers of Students with Visual Impairments (TVI) Toolkit

  • PKU Resources from University of Louisville School of Medicine

    The University of Louisville School of Medicine website provides a wide range of PKU (Phenylketonuria) resources to support families.

    The Family PKU Booklet provides information for families after a positive newborn screening. Using illustrations and clear language, the booklet helps make complicated, scientific information easier to understand.

    The site also includes:

    • Caregiver and school preparation tips
    • Nutrient trackers
    • Downloadable PHE and protein log templates
    • Recipes and low protein food suppliers
    • PKU community resources

  • Progress Center for Independent Living Serving Suburban Cook County

    The Progress Center for Independent Living serves over 133 municipalities throughout suburban Cook County. It is a community-based, non-profit, non-residential service and advocacy organization operated for people with disabilities, by people with disabilities. Progress Center provides a variety of training and education services, housing assistance, and tools and resources for people with disabilities to live independently in their own homes. These include:

    • Youth transition to adulthood program
    • Independent living skills training
    • Peer counseling
    • Housing assistance
    • Deaf services
    • Braille classes
    • Radio Independent Living 24/7