Please participate in Tomorrow's Events - Rare Disease Day

Two topics noted below are:

1. Karen James spearheads the MEBO Research's email campaign to UK medical community contacts to be held on February 29th, Rare Disease Day,
2. Cheryl Fields goes to Washington DC, to the Office of Rare Diseases Research, National Institutes of Health/NCATS, as a table exhibitor for MEBO Research at the NIH Clinical Center.

Wednesday 29th February is International Rare Diseases Day.

It would be good to make our voices heard on this day

Please support MEBO Research's two directors, Dr. Cheryl Fields, Community Outreach Director/US, and Karen James, Public Relations Director, in their respective programs.

Cheryl Fields, goes to Washington DC, to the Office of Rare Diseases Research, National Institutes of Health/NCATS, as a table exhibitor for MEBO Research at the NIH Clinical Center.If you should be attending this event, please try to find the MEBO Research table where she will be featuring TMAU and other yet to be identified body malodor conditions. MEBO's table exhibit at Rare Disease Day at NIH.

Karen James, has asks our entire international community to please send an email on February 29th with the information noted below to the list of UK contacts in the medical community she mentions in her post, Message from Karen James about Rare Disease Day.

This is an example of the email you can send. You can either copy and paste it, or modify it to say whatever else you may want to say:

TMAU and other foul-odour-producing metabolic/systemic disorders (which, unfortunately, are still un-named) are very highly under-diagnosed conditions. TMAU (and other odour disorders) are considered rare disorders. However, the fact that they are so rarely diagnosed is a key issue. We have contacted you before requesting help with a simple task – raising awareness of TMAU and odour conditions primarily amongst the medical professions. We ask you now, on this day which recognises rare diseases, to reconsider the plight of sufferers of this devastating, invisible disability. If our existence continues to be ignored, research is less likely to occur and a cure will not be found. It is our right to be heard on this day and to protest against the social rejection and dismissive attitudes we face.

Below is a raising awareness petition devised by MEBO Research which can be signed (anonymously) by any individuals who believe that sufferers of odour disorders have the same human rights as other human beings.

http://www.meboblog.com/2011/06/raising-awareness-and-research-funding.html

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As a community, we have united in the past and have made a significant impact in the medical communities in the American Psychiatric Association and with the UK
NHS Evidence – UK Database of Uncertainties about the Effects of Treatments (DUETs). Let's keep up the momentum and join forces with all other organizations on this special day.

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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