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Reminder of our presence 16 November

PostPosted: Thu Nov 01, 2012 2:11 pm
by malory
Gentle Reminder on November 16th: Raising Awareness
We are making progress as far as raising awareness is concerned, but we can’t expect the general public to know about malodour conditions when the medical establishments don’t.

This is a good time to remind the medical establishments of our presence; for the first time in the UK in 150 years, there will be a legislative change regarding the monitoring of General Practitioners’ efficiency. In view of these changes, which will involve GPs coming under scrutiny, it may be that GPs are prompted into reflecting on their ‘continuing professional development’ and also the manner in which they interact with patients. In light of this, it seems a good time to remind the medical organisations and the health secretary that people with odour disorders not only exist but expect and deserve help.

On NOVEMBER 16th 2012, 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.

Royal College General Practitioners

Royal college of Physicians

General Medical council

Medical Research Council


Health MPs

Dental Orgs.

Re: Reminder of our presence 16 November

PostPosted: Thu Nov 15, 2012 2:37 pm
by malory
It is also 'Children In Need' fundraising time in the UK so I will re-word my e-mail to emphasise the fact that many sufferers of odour disorders are CHILDREN and that their social developments are seriously damaged by odour conditions.

In the USA people are sending letters of protest about proposed cuts to funding for rare disorders. Please see MEBO Research website for the NORD letter being sent in protest to these cuts and take action! Our disorders are considered 'rare' and any research to help us will take place under the umbrella term 'rare disorder'.

Re: Reminder of our presence 16 November

PostPosted: Fri Nov 16, 2012 10:20 am
by malory

Congress has just returned from its post-election recess. Now our nation is in a countdown to devastating budget cuts that will go into effect for NIH, FDA and other government agencies on January 1 if Congress doesn't take action to resolve the budget impasse.

These across-the-board budget cuts of 8.2% would have a major impact on rare disease research funded by NIH and the review of potential new therapies at FDA. They would mean the loss of $2.5 billion from NIH's $30 billion medical research budget. And they could significantly reduce NIH's ability to promote innovation in areas such as translational research to bridge the gap between basic research and treatments for patients.

The cuts would also slice $319 million from FDA's budget and force the agency to undergo major staff reductions, leading to much slower drug reviews and approvals. They would stall implementation of many of the important rare disease provisions in the FDA safety and Innovation Act that we all worked so hard to get enacted earlier this year.

You can do something to help keep this from happening: In the Legislative Action Center on NORD's website, you'll find a basic letter NORD has prepared that you can personalize with your own information and submit to your members of Congress and the White House.

This letter recognizes that our nation is in a fiscal crisis but presents the case for a balanced approach to deficit reduction that does not include further cuts to "Non-Defense Discretionary (NDD) Programs." These are programs representing the core functions that government provides for the benefit of all, including medical and scientific research, education, public health and more.

NORD has joined more than 80 other organizations in the Coalition for Health Funding to present a broad base of support urging Congress and the White House to reach agreement on a deficit reduction plan before January so that the cuts won't be implemented.

Please join us in this important campaign by submitting a letter to your elected officials today urging them not to let "sequestration" (the across-the-board budget cuts) happen. You can personalize your letter by adding information about the way a rare disease has impacted your family.

NORD will keep you informed as this situation unfolds. And we encourage you to share this campaign with your family and friends. Our nation is in a fiscal crisis, but cutting medical research programs that create jobs and stimulate our economy is not the answer.