Rare Disease Day, taking place each year on 28th February, is the globally coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

The film, ‘Noah’s Story’, highlights the fact that 1 in 20 people will be affected by a rare disease at some point in their life, and 75% of rare diseases affect children. Children like Noah – who had CLN2 Batten Disease.

Emily Wigginton, Bedrock’s Head of Client Services explained the inspiration behind the film… “In my curiosity to learn more about different rare diseases I found the website Noah’s Hope – Hope4Bridget and the story that the VanHoutan’s share about their family’s journey with CLN2 Batten Disease. It really moved me, and I felt compelled to use our voice on Rare Disease Day to help raise awareness, start conversations and help drive change. The VanHoutans and the families they put me in touch with are truly inspirational and I know how much it means to them that we shine a light on Batten Disease and help bring more awareness to the public about rare disease. I’m very grateful to them all for trusting us with their stories.”

Though Rare Disease Day is patient-led, everyone from individuals and families to healthcare professionals, researchers, clinicians and policy makers can participate in raising awareness and taking action today. ‘Noah’s Story’ is our contribution towards raising awareness for this vulnerable population who require immediate and urgent attention.

Watch ‘Noah’s Story’ here. It’s 4 minutes of a true story you won’t want to miss: