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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

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Blog Archive

Friday, September 27, 2013

Webinar : Social Security Administration's Compassionate Allowances initiative


The Social Security Administration (SSA), considers TMAU a "severe impairment" listed under section 5.05 in SSA impairments. However; SSA will not grant a disability payment on TMAU alone, rather there needs to be a "mental" disorder as well.
Cheryl L. Fields, MBA, Ph.D. (ABD)
Human Resources Consultant
MEBO US Community Outreach Director

The following is a webinar hosted by the USA charity the National Office for Rare Disorders (NORD)

"On Wednesday, Sept. 18th, NORD hosted a teleconference on the Social Security Administration's Compassionate Allowances initiative. Peter Smith, a policy analyst with the SSA, provided an overview of this initiative and responded to NORD member questions, such as how SSA identifies diseases to add to the list and how patient organizations can provide input in this process."

The webinar can be watched below or on the NORD website : SSA CAL webinar



MEBO Research have previously submitted Trimethylaminuria to be added to the list of disorders on the Compassionate Allowance List, but it was rejected. MEBO are resubmitting a new request for TMAU.

The following is a quote from the accompanying email newsletter sent by NORD about the webinar :
We have received several questions from members on how to add their disease to the Compassionate Allowances list (CAL).  SSA has developed the list with significant input from a series of public hearings and information submitted by advocacy groups, medical and scientific experts, and others.  NIH has provided scientific guidance to SSA in this process.  A primary consideration is whether conditions meet the SSA definition of a disability.  That definition can be found here.
On the webinar, in response to a question from a NORD member about how to submit a disease for consideration for the CAL, the SSA team recommended using the format employed by SSA in its impairment summaries of diseases currently on the list.
To view these summaries, click on any disease name on the current list of Compassionate Allowances diseases.
For example, view the impairment summary for Acute Leukemia.
Members who have additional questions after viewing the webinar are encouraged to contact the Compassionate Allowances Team at compassionate.allowances@ssa.gov
NORD website : rarediseases.org


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MEBO Research
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