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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 27-01-18, 05:52 PM   #1
jasmin
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Join Date: Jul 2013
Location: London
Posts: 6
Default public and patient involvement (PPI) in research opportunties

Hello All

Does anyone know of ways to get involved in the PPI side of research?

I have been told that I am not eligible for much of the research as I fall into the reduced penetrance range, however this does not squash my passion to help with research.

I thought I could possibly help out by being one of the patients/public who are approached to help with the design and feasibility of research ideas.

Does anyone know who would organise this sort of service? Or the name of someone to approach?

Thank you,

Jasmin
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Old 29-01-18, 10:57 AM   #2
HDAModerator
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Posts: 56
Default Re: public and patient involvement (PPI) in research opportunties

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Originally Posted by jasmin View Post
Hello All

Does anyone know of ways to get involved in the PPI side of research?

I have been told that I am not eligible for much of the research as I fall into the reduced penetrance range, however this does not squash my passion to help with research.

I thought I could possibly help out by being one of the patients/public who are approached to help with the design and feasibility of research ideas.

Does anyone know who would organise this sort of service? Or the name of someone to approach?

Thank you,

Jasmin
Hi Jasmin

Ruth Abuzaid is the contact person from the HDA. She is heading up HD Voice which is a group of people involved in PPI. You can contact Ruth directly on 0208 446 9879 or email ruth.abuzaid@hda.org.uk
She will be very happy to hear from you.
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