Project Rare


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.

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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.

Latest Episode:

Episode 14

18 months after the gene therapy treatments the Flysjo family will soon be able to travel back home to Sweden. ______ Project …


Episode 13

The children have their first round of gene therapy treatments.


Episode 12

Feeling the excitement for the kids finally being approved to undergo gene therapy.


Episode 11

The expectations and the considerations being so close to the gene therapy.


Episode 10

Getting through one of the last tests and seeing some of the data.


Episode 9

Something to dance about and a look at the next steps.


Episode 8

Forget the hospital room… let’s move into a castle!


Episode 7

Making life work in a hospital room is not ideal.


Episode 6

Hampus uses his bravery to undergo various blood samples and tests. One thing is certain… bravery and strength run in this family.


Episode 5

Nothing about this is easy.


Episode 4

The plans change again, but gene therapy is still on the horizon.


Episode 3

Jessica thinks about what is coming next while spending her morning with Julia, the smaller of the twins.


Episode 2

The challenges pile up as there is more than one virus to be concerned about.


Episode 1

Meet the family! They had to leave Sweden early, but their journey to become one of the first to undergo clinical trials for a rare disease called GM-1 is close to becoming a reality.