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Families in Birmingham: We need you to help with our film!

The up-coming Rare Film Festival, will shine the light on the experiences of people with rare conditions (affecting fewer than 1 in 2000 people) and their families. We are delighted that we have been paired with film-maker Charlie Stonham (who you may remember from the fantastic film that he produced about his experiences of living with Fragile XE Syndrome) to create a new film about Fragile X, as part of the festival.

We are looking for volunteers to participate in the film:

Where: 52 Pritchatts Road, University of Birmingham

When: Saturday 7th December (10am-1pm: a slot to be booked during this time frame)

Who: People with Fragile X Syndrome and/or their families

What: We are looking for people with Fragile X and their families to be interviewed on film about their experiences of Fragile X. Questions include:

  • What is the #1 thing you want people to know about Fragile X?

  • What is a myth that you would like to tackle about Fragile X?

  • What is one word which you would use to describe Fragile X?

Though, there is flexibility about the nature of the interview and it may be adapted to make it more accessible.

Once created, the film will be submitted to the Rare Film Festival and may be selected as a winner to be shown at the Awards Ceremony in Regent Street Cinema in front of an audience of major rare disease supporters, including charities, patients and patient advocates, researchers, healthcare professionals, film-making professionals, industry representatives, digital and PR agencies. In addition, the film will be shared and promoted by The Fragile X Society.

How: if you would like to take part, or you have any questions, please email Becky Hardiman (


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