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Re: What is outcome of UK - London meeting?
agarbati Views: 1,420
Published: 16 years ago
This is a reply to # 790,993

Re: What is outcome of UK - London meeting?

Sorry about the slow reply. Academics present included Prof Shephard (University of London) and her husband. There was also another academic but I can't remember his name. They talked with many of us and examined test results for those people who had been tested for Trimethylaminuria. One or two of us had also got other tests done such as blood/urine organic acid and amino acid profiles.

No other important contacts were made although the people who got tested had mentioned that they were tested by Dr Lee (London) and Dr Manning (Sheffield Royal Infirmary). No further investigations came out of the meeting.

The academics suggested we try to raise money for research by, for instance, contacting grant bodies and private funding sources. I can't remember which ones we tried but we had no luck as these are rare disorders and Pharmaceutical companies do not see a good market for such rare conditions.

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