Medical/Health Resources
Cleft and Craniofacial Condition Resources
HealthyChildren.org, the parenting website of the American Academy of Pediatrics, provides articles and information for parents and caretakers of children with a cleft lip, cleft palate or craniofacial disorder.
ClinicalTrials.gov is a place to learn about clinical studies from around the world.
CMS Sickle Cell Disease Provider Toolkit
The Centers for Medicare & Medicaid Services (CMS) Sickle Cell Disease (SCD) Provider Toolkit provides help to strengthen the infrastructure across care settings and support the needs of people with SCD. The toolkit includes:
- How CMS program coverage can assist people with SCD
- General information about SCD
- Resources for individuals with SCD and those who support them
- SCD treatments, pain management and wellness
- Information for providers and community partners
- CMS Action Plan
Community and Residential Services Authority (CRSA)
The Community and Residential Services Authority (CRSA) is an interagency group that identifies and addresses barriers facing parents, families, professionals and providers trying to get needed services and programs for individuals with a behavior disorder or a severe emotional disturbance. CRSA’s free and confidential services include:
- Helping agencies, schools and parents form working partnerships using a team approach
- Addressing/resolving multiple agency disagreements about residential placement or funding of placement and services
- Assisting local communities in developing and strengthening collaborative interagency networking on request
You can also call CRSA to connect with a program coordinator who will listen and help you develop a plan of care at (877) 541-2772 or (217) 782-2438.
Community Nurse Health Center provides primary medical care and dental care. Services are available to all families and individuals regardless of your insurance status or ability to pay. A sliding fee is available for low-income and uninsured individuals. Medicaid is accepted.
Complex Care at Home for Children
The Complex Care at Home for Children website aims to provide an educational resource for parents and caregivers of children with medical complexity. The site offers information and tools to help facilitate daily care, ensuring a safe environment for the child and family. Topics include:
- Tracheostomy and other types of respiratory care
- Peritoneal dialysis
- Enterostomy care
- Enteral nutrition
- Parenteral nutrition
- Intravenous antibiotic therapy
- Intermittent bladder catheterization
Congenital Heart Defects (CHDs) Fact Sheets and Articles
Congenital heart defects (CHDs) are conditions that are present at birth and can affect the structure of a baby’s heart and the way it works. The Centers for Disease Control and Prevention (CDC) provides fact sheets, articles, patient stories and more to help you understand CHDs and their affect across the lifespan.
Congenital Heart Defects Information
The American Heart Association provides information and resources on congenital heart defects (CHDs).
Information is available in English and Spanish.
Conquering CHD provides awareness, knowledge, community and research to conquer the most common birth defect, congenital heart disease/defects (CHDs).
The Conquering CHD website includes resources to help patients and caregivers understand CHDs from childhood through the teen years and adulthood.
Cook For Love is a nonprofit organization providing support, resources and education to individuals, families and clinicians managing phenylketonuria (PKU). The site empowers members of the metabolic disorders community to improve their health through cooking and education.
Cook for Love’s website includes:
- Recipes for creating low-protein foods
- Information about low-protein products to keep in your pantry
- Step-by-step instructions
- Videos for making meals and treats