Maneuvering the Medical System with a Rare Disease

In this episode, Host Annette Hines welcomes Erin Prosser and her daughter, Lucy's (Lulu) neurologist, Dr. Christina Bergqvist of the Children's Hospital of Philadelphia to share their story of working together to care for Lulu and treat her neuro-developmental disease, STXBP1 encephalopathy. This is a great example of how a family member and caregiver can work successfully with a medical provider.

If you're interested in the topic of rare disease, check out our older episodes like "When You're the Patient and the Parent" or "Dig Deep: Finding Hope in Special Needs Parenting with Kelly Speck."

To learn more about STXBP1 and the Prosser family, check out their site here.

Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.