gillette STORIES Tag: rare disease

The former president of the Midwest Rett Foundation, Lisa Evert, shares her reflections on how to advocate for your child diagnosed with a rare disease. Lisa's adult daughter, Jill, was diagnosed with Rett syndrome in 1999.

There’s renewed hope for patients diagnosed with Rett syndrome a year after the FDA approved Daybue (trofinetide) as the first approved treatment to help people diagnosed with the rare neurodevelopmental disorder. Some Gillette patients have been taking the new medication for about a year and have seen improvements. Learn how Gillette providers are leaders in drug trials and new therapies for rare diseases.

Gillette Children's is known worldwide for its expertise in caring for children diagnosed with rare diseases. Gillette complex care pediatrician, Arthur Beisang, MD is part of the team devoted to providing excellent care and improving the lives of children living with a rare disease.

Gillette pediatric neurologist, Tim Feyma, MD, has always been interested in trying to solve life’s biggest questions. Currently he's working to answer some of the most complex questions in rare disease care. He wants to help the patients in his care live a life as free as possible from pain and excess medical interventions.

Gillette Children’s is one of 15 institutions across the U.S. being honored with International Rett Syndrome Foundation (IRSF)’s Center of Excellence designation or redesignation

For Janet Favorite, navigating her son Robert’s rare condition has been a rollercoaster, steadied by her family’s commitment to providing him with expert care and access to resources at Gillette Children’s. Read her story here.