Medical/Health and Wellness 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
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
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
- The Insider’s Guide to Drug Formularies & Medication Benefits
The PAF also offers information and resources in Spanish.
PAF is also available by phone on Monday through Friday from 7:30 a.m. to 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
Nemours KidsHealth provides doctor-reviewed articles, videos and health information on a wide range of topics for parents, kids, teens and educators in English and Spanish. KidsHealth offers information on growth and development, diseases and conditions, school and family life, visiting the doctor, medical procedures and more.
Other resources and information include:
- Tips for parents on understanding children’s health, behavior, and growth – from before birth through the teen years
- A kids area where they can learn how the body works and more
- A place for teens with topics such as body self-esteem, playing sports, knowing the signs of an abusive relationship and more
- A section for educators with teaching tools to use in the classroom for all ages
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.
For questions, please use the online form to contact the Courageous Family Network.
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:
Normal Moments supports Chicagoland families with critically ill/medically complex children up to age 17 by providing help with many household and outdoor tasks. The organization matches volunteers based on the families’ needs, volunteer location and interests. Support includes:
- In-home help with necessary chores such as house cleaning, laundry, pet care and other errands
- Outdoor services such as lawn maintenance and snow removal
- Annual holiday programs
Please note: Normal Moments volunteers may not provide care for dependents. A responsible adult over 18 must be in the house while a volunteer is present with children.
For questions, please fill out the online form on the Normal Moments’ Contact Us page or call (630) 888-8111.
