Health Condition and Disability-Specific Resources
National Institute on Deafness & Other Communication Disorders
The National Institute on Deafness and Other Communication Disorders (NIDCD) conducts and supports research in the normal and disordered processes of hearing, balance, taste, smell, voice, speech, and language. The website offers health information and resources that address these areas.
National Library Service for the Blind and Print Disabled (NLS)
The National Library Service for the Blind and Print Disabled (NLS) is a free braille and talking book library service for individuals with temporary or permanent low vision, blindness, or a physical or perceptual disability that prevents them from reading or holding the printed page. Through a national network of cooperating libraries, NLS offers books in braille or audio, which can be mailed to your door for free or downloaded instantly.
NLS works to ensure that all may read by providing eligible individuals with access to reading materials, regardless of age, economic circumstances, or technical expertise.
For questions, please contact (888) 657-7323 and follow the prompts or email nls@loc.gov.
New Kingdom Trailriders (NKT) in Sherrard offers therapeutic horseback riding lessons for children ages 4 and up and adults with autism, mental illness, disabilities and other challenges. The lessons help promote mental focus, fine and gross motor skills, coordination, social skills and self-confidence. NKT serves residents in the greater Quad City area and surrounding communities. A limited number of scholarships are offered per riding session to individuals with proven financial need.
For questions, please contact NKT at (309) 764-4220 or info@nktriders.org.
New to Seizures and Epilepsy Toolkit
Hearing about epilepsy and seizures for the first time can be frightening and confusing. The Epilepsy Foundation’s “New to Seizures and Epilepsy Toolkit” provides a starting point for individuals, parents and caregivers to learn about:
- What epilepsy is
- Available resources
- How to make the most of doctors’ visits
- How to take control of seizures
Individual fact sheets on topics including seizure first aid and developing your own seizure response plan are also available. All materials are available in English and Spanish.
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:
Ollie Hinkle Heart Foundation – Ollie’s Branch
The Ollie Hinkle Heart Foundation (OHHF) offers a variety of information, resources and mental health support for families caring for children with pediatric heart conditions and heart disease. OHHF resources include:
- Free mental health services through Ollie’s Branch. All sessions are completely free regardless of insurance status.
- Financial support for families whose heart warrior is currently inpatient or has been admitted within three months of the request. OHHF Community Outreach requests are considered on a case-by-case basis and can help with housing, utilities, transportation, medical bills, and more.
OHHF’s mental health access program is open to heart-warrior families anywhere in Illinois. Financial support requests may come from anywhere in the United States.
For questions, visit the OHHF website or email info@theohhf.org.
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.
The Parent Guide to Autism from the Illinois Chapter of the American Academy of Pediatrics offers a free seven-day email series that provides practical guidance on autism, early intervention and supporting your child. Available in English and Spanish, the emails cover topics such as what autism is, how to recognize early signs, steps in the diagnosis process and more.
Each Parent Guide to Autism email takes less than 10 minutes to read. Topics also include:
- How to access therapies and early intervention services
- Your child’s rights to school support if they have autism
- Real strategies for daily life
- Where to find resources and support in Illinois
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.
PatientsLikeMe uses the power of community and digital platforms to improve the lived experience of patients managing complex health conditions. PatientsLikeMe offers people navigating a wide variety of health journeys a central hub for peer support, personalized health insights, tailored digital health services and patient-friendly clinical education.
PatientsLikeMe digital platforms cover five key areas where you can dive into discussions, ask questions and gain insights from others like you:
- Community – 70 communities that cover 2,800 conditions where you can make helpful connections and be part of a safe community
- My Health – An easy-to-navigate place for tracking symptoms, treatments, labs and vitals
- Conditions- Learn how to manage your condition better and share your experiences with others
- Treatments – Learn from others and find the treatment that is right for you
- PatientsLikeMe Community Voice Blog
For more information and a list of frequently asked questions, visit the PatientsLikeMe Help Center.
Still have a question? Please fill out and submit the form on the PatientsLikeMe Contact Us page.