Medical/Health Resources
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+
National Resource Center for Patient/Family-Centered Medical Home
The National Resource Center for Patient/Family-Centered Medical Home provides information, support, and advocacy for families and pediatric healthcare professionals who care for children with special needs in managed care arrangements. The “medical home” isn’t a place. It is an approach focusing on strengthening and improving the system of care for children and youth with special health care needs and their families.
Located on the American Academy of Pediatrics website, the National Resource Center for Patient/Family-Centered Medical Home offers:
- Information on why a medical home is important
- A medical home overview and FAQs
- Tools and resources for families
- Resources for medical professionals
- Care coordination resources
National Resource Center for Patient/Family-Centered Medical Home
Family members are the primary caregivers and support in a child’s life. Practices and healthcare organizations that are truly family-centered provide care in equal partnership with families, caregivers and children.
This page for families and caregivers from the National Resource Center for Patient/Family-Centered Medical Home includes tools, resources and links to information that will assist families in successfully partnering with their child’s medical home. It includes templates for how to build a care plan for your child.
Navigating Health Insurance and the Health Care System
The Patient Advocate Foundation (PAF) provides valuable information and understanding to patients navigating the healthcare system.
PAF’s Education Resource Library offers information on a wide variety of individual health and health insurance-related topics including:
- Finding and Selecting Insurance
- Making the Most of Your Health Insurance
- Engaging with Insurers: Appealing a Denial
- Patient Advocate Foundation Drug Formulary FAQ
Watch their short tutorial “Welcome to the Education Resource Library” to learn how to find and share materials. Many of the materials are available in English and Spanish.
PAF is also available by phone Monday – Friday, 7:30 a.m. – 4 p.m., at (800) 532-5274.
NeedyMeds is a national non-profit organization providing information on healthcare and medication programs designed to help people afford their medications and other healthcare costs. NeedyMeds can help with paying for prescriptions, finding a free clinic and understanding your healthcare options. All the information is free, easy to access and updated regularly.
NeedMeds also offers:
- A toll-free helpline at (800) 503-6897 weekdays from 8 a.m. to 4 p.m.
- A directory of affordable health clinics for medical, dental, behavioral health and substance abuse services
- Assistance with finding a private or government-funded organization offering help with treatment costs associated with specific diagnoses
- A Patient Assistance Program (PAP) providing free or discounted medicines to people who are unable to afford them
- Information on coupons, savings cards, rebates and co-pays
NeuroJourney is an educational resource for parents, caregivers and clinicians navigating the ever-evolving needs of children with severe neurological impairment (SNI).
You can find both practical and medical information and insights from parents and clinicians about the social and emotional experiences common to having a child with SNI. Resources include a Caregiver Worksheet as well as guidance to help build the care team, prompts for conversations with specialists and more.
New Lenox Transportation Service
New Lenox Transportation Service provides safe, affordable and reliable transportation for all New Lenox Township residents. Transportation is provided within the New Lenox Township and Village, Monday through Friday, from 7 a.m. to 3:30 p.m. Rides are also available to the Mokena, Frankfort and Joliet areas for medical and physical therapy appointments or employment for New Lenox Township residents ages 22 years and older with disabilities. You must make reservations by telephone.
Transportation office hours are 7 a.m. to 3 p.m. To schedule a ride, please call transportation services manager Debbie Cunningham at (815) 485-6431.
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.
Newborn Screening: IDPH Genetics Program
This explains the Illinois newborn genetic screening program.
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: