18 months after the gene therapy treatments the Flysjo family will soon be able to travel back home to Sweden. ______ Project …
A Swedish family pursues an opportunity to become one of the first to undergo clinical trials for each of their three children who suffer from an extremely rare neurological disease. Follow the start of their journey through the dark cloud of the Pandemic and experience a light of hope as they take the next steps in receiving treatment at the National Institute of Health in Washington, D.C.
Project Rare is a collection of films created to educate, inspire and make a lasting difference for the rare disease community.
This collection of films features families, caregivers and healthcare professionals wrestling with the complexities of grief, clinical trials and caring for loved ones with incurable diseases. The B Brave Foundation is sharing these important and inspiring stories with the world.
Your role in this effort is as simple as watching, sharing the content or submitting a story for consideration. This is for the next generation.
This is Project Rare.
Hampus uses his bravery to undergo various blood samples and tests. One thing is certain… bravery and strength run in this family.
Jessica thinks about what is coming next while spending her morning with Julia, the smaller of the twins.