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.

SIP Arts Foundation, Inc. is an Illinois nonprofit supporting individuals with disabilities and their families. It offers community education on special education laws, disability rights and advocacy. The foundation also offers opportunities to provide a voice and foster healing through creative expression in the arts. SIP Arts Foundation programs include:

• One-on-one person-centered planning that maps each family’s goals and next steps
• Free community meals that reduce isolation and bring families together
• Group advocacy workshops where every family leaves with a personalized binder organizing their child’s Individualized Education Program (IEP), rights and records
• Pathways to Expression, an inclusive studio arts program in Belleville for children ages 4 to 12 with and without disabilities
• Self-advocacy programming in St. Clair and Madison counties that helps young people find their voice and prepare for the transition to post-secondary education and employment

For questions, please visit SIP Arts Foundation’s “Let’s Connect” page or email  info@sipartsfoundation.org.

Southern Illinois Pathways is a grassroots initiative led by individuals with disabilities, family members and professionals to support families navigating disability, special education and mental health systems across metro east Illinois. It offers free, plain-language workshops for families, students, young adults, and individuals with disabilities. It helps make disability rights, Individualized Education Programs (IEPs), mental health supports, local services and self-advocacy easier to understand.

Southern Illinois Pathways offers free:

• Resources for families
• A local workshop series on Saturday mornings at libraries in each county. The workshops cover disability rights, IEPs and services in plain language.
• Events

Southern Illinois Pathways is a program of SIP Arts Foundation, Inc., an Illinois nonprofit advancing arts, disability advocacy and education across Madison, St. Clair and Monroe counties in metro east Illinois.

For questions, please contact Southern Illinois Pathways at  (618) 816-8834, (618) 623-2423 (direct) or info@southernilpathways.com.

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:

• The Chronic Disease Advocacy Toolkit to learn about the different types of advocacy, being an advocate, taking action and more
• The Ambassador Program
• Information on partners, allies and patient-founded/patient-driven groups
• State and national policy information

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

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.

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:

• The Support Line at (888) 900-6486. It is available on weekdays from 7 a.m. to 4 p.m.
• Mito University featuring videos, articles and resources to better navigate your journey
• The Mitochondrial Care Network: New Patient Guide in English
• The Mitochondrial Care Network: New Patient Guide in Spanish
• Ask the Mito Doc monthly webinar
• Bench-to-Bedside seminar series, which brings the global scientific community together to discuss mitochondrial disease research
• Clinical trial opportunities for patients and more

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

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 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.

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.

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