Community Events

Fighting The Rare, Rare Disease Documentary Premiering June 26

June 26, 2023

The upcoming Lafora disease documentary was filmed in San Diego, USA last September during the Lafora Science Symposium.

The documentary is called ‘Fighting the Rare’, and includes Niki and Angelina, Jenifer and Mariah Merriam, and many professors and researchers in the Lafora disease space.

Dr. Jordi Duran and his brother Dr. Jaume Duran, a film director and screenwriter, received a grant to make a documentary on rare diseases.

Dr. Jordi Duran is a biomedical researcher from Barcelona, Spain, and is working on research for rare diseases, especially Lafora disease. He shares articles and publications related to neuroscience, neurodegeneration, and glycogen accumulation.

More about the documentary

The trailer features Niki and her daughter Angelina.

The launch date of the documentary is June 26th (I will provide the link beforehand), and we hope it is another stepping stone to creating awareness and finding a cure for rare diseases.