Contact Address *
Who in your family has a rare genetic condition?*
More Than One Family Member
What is the diagnosis?
What is their ethnic group?
Asian or Asian British: Bangladeshi
Asian or Asian British: Pakistani
Asian or Asian British: Indian
Asian or Asian British: Other Asian
Mixed: Other Mixed
Mixed: White and Asian
Mixed: White and Black African
Mixed: White and Black Caribbean
Black or Black British: African
Black or Black British: Caribbean
Black or Black British: Other Black
White: Any Other White
Other Ethnic Groups: Chinese
Other Ethnic Group
Full name of person 1 with rare genetic condition
Full name of person 2 with rare genetic condition (if applicable)
Full name of person 3 with rare genetic condition (if applicable)
Date of Birth (Person 1)
Date of birth (Person 2)
Date of birth (Person 3)
Have you been bereaved as a result of a rare genetic condition?
Does your family receive any tax credits or income related benefits?
Does the person receive DLA / PIP?
What are the symptoms and impact of the rare genetic condition (for example, physical disability, learning difficulties/disability, mental health issues, communication difficulties, life limiting/threatening, complex health needs)?
We are often contacted by families wanting to be put in touch with others affected by the same rare genetic condition or facing similar issues. If you are happy to offer peer support to another family, please tick this box. We will not connect you with another family without first contacting you to seek your consent
Can we send you emails?
Can we send you mail?
Can we phone you?
Can we send you text messages?
How would you prefer us to get in touch with you?
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