MEBO PATM : Please join today's email Raising Awareness Campaign

CHILDREN IN NEED DAY

PLEASE BE A PART OF THIS EMAIL
RAISING AWARENESS CAMPAIGN
You can email from anywhere in the world.

A word from Karen James

I HOPE SOME OF YOU JOIN IN THIS CAMPAIGN TODAY-ESPECIALLY IF YOU LIVE IN THE UK.

Today is Children In Need Day in the UK. Children and teenagers who develop odour disorders are most definitely in need and suffer much more than those of us who developed the disorder as adults.

Nobody will give us a cure without us asking for it, so let's ask for it-it's just writing one e-mail and sending it to the contacts on the list (especially RCGP contacts)

COME ON!!!!

We could all send brief, polite e-mails and letters to the contacts below. My e-mail (less than 200 words) may be something like this:

Although you may have been contacted before regarding raising awareness of foul-odour-producing conditions such as TMAU (Trimethylaminuria), there has been little improvement in the situation for odour sufferers. I write now at a time when Sir Bruce Keogh is encouraging doctors to stay up to date with current developments in medicine.

Some odour sufferers are still being misdiagnosed or fobbed off by baffled GPs. Sometimes their conditions are dismissed as ‘psychological problems.’

Despite the fact that many odour sufferers suffer bullying and ostracism, their conditions are not always taken seriously by medical professionals.

Odour conditions are still taboo disorders: even in the metabolic unit at the UCL Neurology Hospital where many TMAU patients undergo consultations, there are no informative leaflets or posters regarding the condition.

There are no government-backed initiatives to educate the general public about odour disorders despite the fact that the number of sufferers is unrecorded and ever-increasing (TMAU test requests trebled over the past 2 years).

Thank you so much for reading this e-mail. I hope it results in direct action to address the issues raised. Failing that, could you please forward this e-mail to as many colleagues and medical professionals as you can.

Karen James
MEBO Research Public Relations Director

Another example of what could be written:

You are getting this email because your public service work allows you to do something about the terrible disease TMAU (Trimethylaminuria). You have the ability to help patients!
Many children suffer from TMAU with no improvement in diagnosis, treatment, therapy, and furthering of scientific research.
Sir Bruce Keogh is currently encouraging doctors to stay up-to-date with current medical developments. TMAU is one of them!
Please do whatever in your power to:

Raise Awareness to General Practitioners

Raise Awareness to the General Public

Assist children/patients that have been bullied and ostracized

Provide informative leaflets and posters about the disease to the general public and in the UCL Neurology Hospital

We need your help to do something.
Now is your opportunity.

Royal College General Practitioners
circ@rcgp.org.uk
chair-circ@rcgp.org.uk
chiefexecutive@rcgp.org.uk
president@rcgp.org.uk
chairman@rcgp.org.uk
vicechair@rcgp.org.uk
chair-scottish-counc@rcgp.org.uk
nedmunds@rcgp.org.uk
chairmanni@rgcp.org.uk
international@rcgp.org.uk
ppgchair@rcgp.org.uk
NSparrow@rcgp.org.uk
rpalmer@rcgp.org.uk
doliver@rcgp.org.uk
pnewman@rcgp.org.uk
swest@rcgp.org.uk

Royal college of Physicians
Humphrey.Hodgson@RCPLondon.ac.uk
education-courses@rcplondon.ac.uk

General Medical Council
education@gmc-uk.org
gmc@gmc-uk.org
publicatons@gmc-uk.org
gmctoday@gmc-uk.org

Medical Research Council
Linda.Willmott@headoffice.mrc.ac.uk.

NPSA
enquiries@npsa.nhs.uk
queries@nres.npsa.nhs.uk

Health MPs
lansleya@parliament.uk
simon.burns.mp@parliament.uk
dhmail@dh.qsi.gov.uk
anne.milton.mp@parliament.uk

Dental Orgs.
enquiries@bda.org
dentalbranch@dhsspsni.gov.uk
wag-en@mailuk.custhelp.com
fgdp@rcseng.ac.uk
editor@badn.org.uk

THANK YOU ALL FOR YOUR FINE WORK!

María