Join/Watch the weekly
TMAU UP Podcasts

MEBO Private Facebook Group
to join : contact
maria.delatorre@meboresearch.org

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact map@meboresearch.org

MEBO TMAU urine test

MEBO Research
TMAU Urine Test
United States only
PROGRAM IS PERMANENTLY SUSPENDED AS OF 2 MAY 2017

Click here for
REQUISITION FORM
Incomplete applications
will NOT be processed

SEE UPDATES HERE

1
test
$150 plus
shipping costs
2
tests
$250 plus
shipping costs

TWO PAYMENT PLAN OPTION
Send email to maria.delatorre@meboresearch.org to arrange, AFTER filling out Requisition Form, please.

Test analysis performed in batches of 20 or more

DATE: 2 MAY 2017
Currently on : PROGRAM IS TEMPORARILY SUSPENDED

Samples analyzed since June 2012 :
352
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
BannerFans.com
RESEARCH DETAILS

DONATIONS THRU 31-NOV-2016:
£ 943.03/GBP
$ 568.00/USD

TOTAL at today's ROE
£0.80/GBP = $1.00/USD

£1,398.07 = $1,745.14

MEBO UK PAYPAL FOR TRINZYME

********
MEBO US PAYPAL FOR TRINZYME

Your currency will be automatically converted to USD or GBP by PayPal.

Option: pay with your credit card instead of PayPal account by clicking on either Donate button above.

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Subscribe to Blog

Enter your email address:

Delivered by FeedBurner

You will be sent a verification email

Subscribe in a reader

Blog Archive

Friday, May 25, 2012

Dr. William Gahl and NIH Undiagnosed Diseases Program


There are over 6,000 Rare Diseases and these affect up to 25 million Americans. They are defined by law as disorders that affect fewer than 200,000 each...there are only a few hundred treatments for these [because]...it's not profitable for pharmaceutical companies to invest in a disorder that involves only 20 people, 50 people, or even 500 people...
We have potential treatments that make sense, that have presumably very few side-effects, and yet, we are not allowed to use them...The Food and Drug Administration ensures the safety of our foods and of the drugs that come to us...but there is one issue, for rare diseases, they apply the same criteria for the use of an investigational drug as they do for common diseases.
FDA: Ensures Drug Safety
People with rare diseases deserve
the same protection as othe human subjects.

Dr. Gahl proposes a change to this FDA's policy,

FDA: Ensures Drug Safety
People with rare diseases deserve
the same protection as othe human subjects.
Risk vs. Benefits?

Some diseases are so rare that there is no financial incentive for pharmaceutical or biotech companies to seek cures or treatments. That leaves physicians like Dr. Gahl without the assistance of research normally performed by profit-seeking pharmaceutical companies. Since FDA does not approve the use of medication on any patient without first having gone through a very expensive research protocol, these potentially effective treatments cannot be administered to rare disease patients, who then go untreated and at times face certain death.

"People in the Rare Disease Community want to be protected, but don't want to be protected to death."
Dr. Gohl
http://www.cbsnews.com/video/watch/?

0 comments:

Post a Comment