Rare and Complex Conditions
Review of Epilepsy and Seizure Tracking Apps
A comprehensive review of three epilepsy and seizure tracking applications by researchers in our Center for Adherence and Self Management.
7 Things Parents Need To Know About Nephrotoxic Medications
Through research we've learned important info in the last 10 years about the effects of nephrotoxic medications on the kidneys.
Heart to Heart: Ryan Goes to Washington, DC – Part 3
Heart advocate Ryan Moore works to spread awareness for congenital heart defects, like the kind he was diagnosed with at birth, in hopes of finding a cure.
Heart to Heart: Ryan Meets Kirk Urso – Part 2
When Ryan met Columbus Crew player Kirk Urso, he had a new friend and role model. Little did they know they were both living with congenital heart disease.
Heart to Heart: Ryan and Kirk’s CHD Story – Part 1
Ryan continues to tell his inspiring congenital heart disease story in books, on Capitol Hill and to other CHD families in hopes of someday finding a cure.
New Animations: Surgical Repair of Congenital Heart Disease
To help families better understand and describe the surgical repair for their child's congenital heart disease, we developed these animated videos.
Receiving Your Child’s Diagnosis: What to Do Next
Parents often feel helpless following a definitive diagnosis for their child. One of our social workers offers potential next steps to take.
Laryngomalacia: Is My Child’s Noisy Breathing Serious?
Laryngomalacia is the most common cause of noisy breathing in infants (stridor). Learn more about other laryngomalacia symptoms to watch for and when to see a specialist.
IBD: 3 Lessons from an Experienced Parent
A mom reflects on her child's experiences with IBD and Crohn's disease, now that he has graduated college and is heading out on his own.
Allergy Friendly Cookies: Milk, Egg and Wheat Free
Make allergy friendly cookies this year with a recipe that is milk-free, wheat-free and egg-free.
Isovaleric Acidemia: Micah’s Metabolic Journey
When he was just a few days old, Micah was diagnosed with Isovaleric Acidemia. His mom shares the story of those scary first days and how far he's come.
Don’t Let Sickle Cell Disease Win
Having sickle cell disease does not mean that you can’t live a normal, fulfilling life.
Cow’s Milk Elimination Diet – What to Eat Instead
Learn how to replace the nutrients in cow's milk with non-milk foods for kids who have a milk-free diet.
Cow’s Milk Elimination Diet – Where to Start
The information parents need to start a milk elimination diet for their child or family who have milk allergy or intolerance.
Chiari Malformation: Before and After Decompression Surgery
Brothers Jacob and Dylan were both diagnosed with Chiari Malformation as infants. Read about their journey before and after decompression surgery.
Living-Related Donor Transplant: How It Changed Me
Hillary Weidner was her daughter's living-related donor transplant match, a procedure needed to treat biliary atresia.
4 Questions to Ask When Your Child Has Recurrent Croup
Rule out more serious causes of your child's recurrent croup. Find out when you should see an ear, nose and throat doctor.
10 Tips for Parents of Kids with Chiari Malformation
Matthew had decompression surgery for Chiari malformation at age 4. Here, his mom offers tips on how to manage this challenging condition.
They’re at it Again: 700 Miles to Hope for HLH
Justin Akin and 20 other cyclists set off from Natchez, MS on Saturday riding 700 miles over 7 days to raise money and awareness for HLH.