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29 February 2012 Rare disease Day

PostPosted: Sat Feb 11, 2012 2:19 pm
by malory
Wednesday 29th February is International Rare Diseases Day. It would be good to make our voices heard on this day.

I am going to contact all of the organisations from last year’s raising awareness campaigns (who have already been informed about TMAU and its effects) and remind them of our presence. Please join in this effort by doing the same! Below is the gist of the e-mail I will send to them and a list of the UK contacts we targeted last year. It is a good opportunity to e-mail anyone you know with the MEBO Research petition and also to contact organisations in your own country if you are not in the UK. Please add any contacts from outside the UK to the list below and UK sufferers will be sure to support you by e-mailing them as well. You can e-mail most of the contacts using blind carbon copy to save time but I will also send some letters via post as most professional organisations are obliged to reply in writing to any letters received.

The gist of my e-mail:
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.bloodbornebodyodorandhalitos ... nding.html

UK Contacts

Royal College General Practitioners

Royal college of Physicians

General Medical council


Medical Research Council


Health MPs

Dental Orgs.

USA infectious disease clinic

Apologies for those e-mails which do not work. Please add relevant contacts to the list. I have not included online contacts or addresses for written letters but let me know if you would like these also.
Any other ideas?

Re: 29 February 2012 Rare disease Day

PostPosted: Mon Feb 20, 2012 9:56 am
by malory
I will never give up on these initiatives; being proactive and positive is really the only way forward. So, besides e-mailing the above official contacts, I am going to e-mail people I know about rare disease day with the following e-mail. Please copy it and send it to your friends as well to show your support:

Dear Friend,.

Thank you for your support in signing our petition (it can be done anonymously)
http://www.bloodbornebodyodorandhalitos ... nding.html

Although (secondary) TMAU and similar, un-named metabolic disorders are not as rare as the medical profession pretend, we are celebrating Rare Disease Day on Wednesday 29th February by promoting a video made by Dr Cheryl Fields to promote awareness of the condition(s). The video needs to be voted for in order to be aired on CNN. Please support us by voting for this video (it takes a minute to sign up to CNN for this purpose).

Also, please forward this e-mail to anyone who may be willing to support our cause.

Thank you

Re: 29 February 2012 Rare disease Day

PostPosted: Tue Feb 28, 2012 9:14 pm
by malory
I have sent my e-mail and the video of Cheryl to the contacts at RCGP etc. on the list above. Please support the effort by joining in!!