Chronic Disease Coalition Chronic Disease Advocacy

The Chronic Disease Coalition advocates on behalf of people with chronic diseases and helps them advocate for themselves. It offers advocate training and resources, educates the public about chronic and rare conditions and raises awareness to increase research funding. The coalition also collaborates with individuals and organizations nationwide to ensure that patients with all types of chronic conditions have access to affordable, high-quality care and that the patient voice and perspective remain at the forefront.

Chronic Disease Coalition resources and programs include:

For questions, please visit Chronic Disease Advocacy’s About Us page and fill out the “Contact Us” form.

Camden Coalition

The Camden Coalition is a multidisciplinary, community-based nonprofit working to improve care for people with complex health and social needs nationwide. The coalition focuses on implementing person-centered programs and piloting new models that address chronic illness and social barriers to health and well-being. It develops and tests care management models and redesigns systems in partnership with consumers, community members, health systems, community-based organizations, government agencies, payers and more. Resources include a complex care start-up toolkit, webinars, journal articles, data and more.

Camden Coalition’s full library of resources includes:

  • A National Center initiative that collaborates with other experts across the nation to develop best practices, inform policy and foster an engaged and accessible community to teach and deliver better care to individuals with chronic illness and social barriers to health and well-being
  • Amplify: A consumer voices bureau
  • Toolkits on a wide range of topics
  • Webinars and videos
  • Events and opportunities
  • Community and consumer engagement
  • Data analysis and integration

The Camden Coalition also offers the National Consumer Scholars program to help people with lived experiences build skills, network and become sought-after experts in the national complex care community.

If you have any questions, please visit the Camden Coalition’s Contact Us page.

United Mitochondrial Disease Foundation

The United Mitochondrial Disease Foundation (UMDF) supports and empowers patients and families affected by mitochondrial disease. UMDF supports research and provides a wide variety of resources, toolkits, education and assistance with insurance, diagnosis and access to quality care.

UMDF resources include:

For questions, please contact the United Mitochondrial Disease Foundation at (888) 317-UMDF (8633) or info@umdf.org.

Aicardi Syndrome Foundation

Aicardi Syndrome Foundation is a volunteer-based, non-profit organization that raises research funds and awareness about Aicardi syndrome and provides information and assistance to individuals affected by the rare neurologic disorder and their families. The foundation also offers information about research and medical trials and also sponsors the biennial Aicardi Syndrome Family Conference.

Families can register their child with the Aicardi Syndrome Foundation to receive the latest research news, announcements and professional information, as well as learn about ongoing research studies that your child may qualify for.

For questions, please contact the Aicardi Syndrome Foundation at admin@aicardisyndromefoundation.org.

SignUp Media – Sign Language Accessibility for the Deaf Community

SignUp Media is a free Google Chrome Extension that provides American Sign Language (ASL) interpretation for content on streaming platforms, including Disney+ and Netflix. The service is available for the Hard-of-Hearing community, hearing parents of Deaf kids, students of sign language and teachers of the Deaf.

If you would like to learn more about how SignUp Media works, you can visit the Frequently Asked Questions page.

If you have questions or don’t see a show or movie that you want ASL interpretation for, you can request interpretation or submit other feedback on the SignUp Media Contact Us page.

Supporting Your Young Child in the Hospital Toolbox

Having a child in the hospital can be one of the most stressful and emotional experiences for families. With medical appointments, therapies, medications and routine changes, life can become overwhelming. It can not only affect your child’s development and well-being, but also your family’s schedules, relationships and self-care.

The Early Intervention Clearing House’s “Supporting Your Young Child in the Hospital Toolbox” aims to help make this journey a little easier. The toolkit includes practical tools, supportive resources, family stories and the “Early Intervention: A NICU Parent’s Guide to Early Intervention Services and Resources” booklet. (Complete the EI Clearinghouse Contact Form to request hard copies of the booklet.)

The “Supporting Your Young Child in the Hospital Toolbox” can help guide you through your child’s hospital experience – whether you are in the Neonatal Intensive Care Unit (NICU), navigating ongoing hospital care or preparing to return home.

Pre-Teen and Teen Mental Health Guide for Parents

The Pre-Teen and Teen Mental Health Guide for Parents from the Illinois Chapter of the American Academy of Pediatrics helps caregivers learn about pre-teen and teen worries, behaviors and signs to watch for, so parents can provide help when needed. This free six-day email series in English and Spanish provides guidance and insight into your pre-teen or teen’s mental health, including dealing with anxiety, screen time and building resilience.

The guide provides one short message each day and includes conversation starters you can try with your pre-teen/teen. Topics include:

  • How your pre-teen/teen’s brain is developing
  • The difference between normal mood swings and real red flags
  • How to navigate social media and screen time without constant battles
  • When to worry versus when to wait – and when to call for support
  • How to talk about relationships, sex and emotional health
  • Practical ways to build resilience that lasts a lifetime

Parent Guide to Autism

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

Health Information Videos in American Sign Language

The Chicago Hearing Society (CHS) offers a variety of health education videos in American Sign Language (ASL), with voice-over and captions. The videos cover topics such as behavioral health, general health and wellness, heart disease, breast health, substance use and more. Some of the videos are also available in Spanish. These videos are for informational purposes only.

For questions or assistance, please contact CHS’s Community Outreach and Advocacy Team at CHSCOA@anixter.org.

Legal Information in American Sign Language

The Chicago Hearing Society (CHS) and the Illinois Equal Justice Foundation (IEJF) offer a variety of videos that provide legal information in American Sign Language (ASL), with English voice-over and captions, for the public. The videos cover topics such as traffic court, domestic violence, obtaining citizenship, types of discrimination and more. These videos are for informational purposes only and are not intended to constitute legal advice.

For questions or assistance, please contact CHS’s Community Outreach and Advocacy Team at CHSCOA@anixter.org.