Marion Resources
What to Expect During and After Your COVID-19 Vaccine
UIC’s Division of Specialized Care for Children put together this helpful fact sheet to help you know what to expect before and after you receive your COVID-19 vaccine.
COVID-19 Vaccine Frequently Asked Questions
All Illinoisans age 5 and up are eligible for the COVID-19 vaccine. UIC’s Division of Specialized Care for Children (DSCC) put together this frequently-asked-questions handout to help our participant families make informed decisions about receiving the vaccine.
Rare Caregiver Respite Program
The National Organization for Rare Disorders’ (NORD) Respite Program is for caregivers (parent, spouse, family member or significant other) of a child or adult diagnosed with a rare disorder.
The Respite Program provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout the year or in a single-use.
For more information about this program, contact NORD at (203) 616-4328 or email CaregiverRespite@rarediseases.org.
Reading a Student’s IEP – Special Education Under the IDEA
Equip for Equality provides this guide to help understand the purpose of an individualized education program (IEP), how to read one, rules to know, special education rights, Individuals With Disabilities Education Act (IDEA) requirements and more.
Preparing For College When You Have Congenital Heart Disease
Going to college is an exciting time filled with new friends and experiences. When you have congenital heart disease (CHD), it can be overwhelming or tempting to put your care on the back burner. It’s very important that you stay in care and are as prepared as possible.
The Adult Congenital Heart Association provides this resource with tips to help you maintain good health while you further your education.
The Job Accommodation Network (JAN) provides free consulting services for all employees, regardless of the condition. Services include one-on-one consultation about all aspects of job accommodations, including the accommodation process, accommodation ideas, product vendors, referral to other resources and Americans With Disabilities Act (ADA) compliance assistance.
When Your Child Has a Heart Defect: Planning Ahead for Lifelong Heart Health
Children with congenital heart defects and disease (CHD) will need lifelong care from congenital heart experts. The Adult Congenital Heart Association provides this brochure to help parents of children born with CHDs support their child’s lifelong heart health.
Mended Little Hearts and St. Jude Medical partnered to create this digital resource guide for parents and caregivers of children with congenital heart disease or defects (CHD).
Medical professionals and parents worked together on this guide to provide accurate and honest information that addresses the tough feelings, questions and concerns parents and caregivers may have.
Go to The Mended Hearts, Inc. HeartGuides page and scroll down to see the Mended Little HeartGuide in English and Spanish.
A number of heart conditions can affect children. Some are structural abnormalities they are born with. Others deal with the electrical system that controls the heartbeat.
HealthyChildren.org, the official parenting site of the American Academy of Pediatrics, provides numerous articles and information about heart conditions, including common heart defects in children, the challenges faced by parents of children with congenital heart disease, dental care for children with heart conditions and more.
The American Heart Association’s Support Network, in partnership with The Children’s Heart Foundation, provides a Congenital Heart Defect (CHD) Support Network for parents of young children diagnosed with CHDs or adults living with a CHD.