Reply to Raising Awareness Mailout

Thanks to everyone who took part in e-mailing the UK Health MPs.
The reply I received is below:

Dear Ms James,

Thank you for your correspondence of 28 November about Trimethylaminuria (TMAU). I have been asked to reply.

I appreciate your concerns about the strategies in place for dealing with rare diseases such as TMAU.

The Department is committed to increasing awareness of rare conditions such as TMAU, and that commitment has been demonstrated through the UK’s involvement in theUK Plan for rare diseases. The Plan will set out a coherent and joined-up approach to tackling rare diseases and will bring together a number of recommendations designed to improve the co-ordination of care and to lead to better health outcomes for everyone with a rare disease. It will also acknowledge existing developments, such as the contribution that expert centres can make to better diagnosis and treatment of rare diseases, while proposing a number of further developments, such as better information for patients so that they can be fully engaged and helped to understand and manage their conditions.

The Plan will include recommendations, actions and examples of best practice for commissioners of specialised services, Royal Colleges, information providers and front-line staff who deliver care to people with rare diseases. In England, much of the implementation of the Plan will be for NHS England in its role as a single national commissioner of specialised and highly specialised services.

You may therefore wish to contact NHS England for further information on the implementation of the Rare Disease Plan and how this may affect services for TMAU. You can contact NHS England by email at england.contactus@nhs.net or by post at the following address:

NHS England
PO Box 16738
Redditch
B97 9PT

I hope this reply is helpful.

Yours sincerely,

Jane S.

ALSO:

It would be a good gesture if people from our community e-mailed the MRC to express our thanks for the TMA research grant

It would be a good gesture if people from our community e-mailed the MRC to express our thanks for the TMA research grant. This would still be a raising awareness campaign and an excellent follow-up to the original campaign requesting the grant.

Contact e-mails are:
linda.willmott@headoffice.mrc.ac.uk
corporate@headoffice.mrc.ac.uk
corporate.corporate@headoffice.mrc.ac.uk

Many thanks and have a great Christmas holiday,

Karen
Karen
Public Relations Director

A Public Charity
karen@meboresearch.org
www.meboresearch.org
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