Become a Media Volunteer

At the Fragile X Society, we can support you to become a media volunteer and talk to the media about your experiences of Fragile X1. Sharing your family’s personal story will help to increase awareness of what Fragile X is, along with the challenges and triumphs that have affected families experiences.

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Background

The Fragile X Society’s aim is to support and empower individuals and families affected by Fragile X. An important step to achieve this is to raise public awareness of these conditions, how they influence the lives of those affected, and tackle stigma relating to disability. Our ultimate aim in doing so is to improve the lives of those affected by Fragile X, through the provision of appropriate health care and statutory services.

 

 

Should you wish to become a media volunteer, we encourage you to read our policy summarising how the Fragile X Society will work with you. It provides information on how we will contact you, how we will get your feedback and sign-off regarding the information we write about you, and how we will use your information. It also outlines our commitment to your privacy and the sensitive handling of your story.

Please note that media volunteers will not be general spokespeople for the Fragile X Society. If the media ask you about anything besides your own personal story, you will need to refer them to the Managing Director of the Fragile X Society.

 

If you have any questions about becoming a media volunteer, please get in touch with Pete:

 

pete@fragilex.org.uk

07400 611064

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When we talk about Fragile X, we are referring to Fragile X Syndrome, as well as Fragile X premutation carriers and the conditions they may experience (Fragile X Primary Ovarian Insufficiency [FXPOI], Fragile X-Associated Tremor/Ataxia Syndrome [FXTAS] and other Fragile X Premutation Associated Conditions [FXPAC]).