Do You Have an Inherited Heart Condition?

I’ve copied a letter which has been forwarded to Mike from Sinduja Manohar of The British Heart Foundation (BHF)…

Dear Mike,

We have an exciting new opportunity for people with an inherited heart condition to help us improve services and provide support. If you have an inherited heart condition we’d very much like you to get involved. If you know anyone who would be interested in this role please do pass this along.

Inherited heart conditions can affect people of any age and it is possible to develop a heart condition due to a faulty gene without presenting any of the symptoms of the condition. Therefore BHF is trying to do more work to ensure these patients are getting the support they need. For example, the Miles Frost Fund will help ensure that genetic testing for immediate family members of those affected by inherited hypertrophic cardiomyopathy is available nationwide. This will mean more people are diagnosed with and treated for the potentially life-threatening condition.

To ensure we are able to represent the wider patient voice in the Miles Frost Fund, as well as other BHF projects related to inherited heart conditions, we are setting up a new patient reference group. The group will be involved in a range of activities including linking up with local sites who have been funded to provide services through the Miles Frost Fund.

If you have an inherited heart condition and would like to get involved have a look at the role description and send a brief summary (max 500 words), to heartvoices@bhf.org.uk by 3 February 2017, stating why you would like to get involved in this project and what you think you can bring to the role.

If you have any questions please email heartvoices@bhf.org.uk or call 0207 554 0426.

Best wishes,

Sinduja

Sinduja Manohar
Patient Engagement Officer
British Heart Foundation
Greater London House | 180 Hampstead Road
London | NW1 7AW
DD: +442075540426

Here is the role description

role-profile-inherited-heart-conditions-reference-group

Here, more information from the BHF

https://www.bhf.org.uk/get-involved/heart-voices/involvement-noticeboard/patient-reference-group-for-inherited-heart-conditions

Closing date is 3rd February 2017

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