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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


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

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
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

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MEBO survey for Dr Hazen click here
Read more/less

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

MEBO Research Clinical Trials

Thursday, March 8, 2012

ADVOCACY ALERT for NORD Member Organizations




Please support this Bill by writing to your legislator asking them to support it.

H.R. 4132, Faster Access to Specialized Treatments or the FAST Act intends to
  1. Speed the approval of new therapies for patients with serious and life-threatening diseases while also maintaining FDA's high standards for safety and efficacy,
  2. provides further clarity of the FDA approval process by codifying and modernizing the well-established Accelerated Approval program
  3. Enhance and expand the Accelerated Approval process with additional provisions to promote development of treatments for unmet medical needs.

Please write to President Obama here : http://www.whitehouse.gov/CONTACT/
Write to your senator : http://www.senate.gov/general/contact_information/senators_cfm.cfm
Write to your House Representative : http://www.house.gov/representatives/
and ask them to "support H.R. 4132, Faster Access to Specialized Treatments or the FAST Act"


For NORD Member Organizations

» » » ADVOCACY ALERT « « «

NORD Supports FAST Act Introduced by Representatives Stearns and Towns

Bill to Expedite Development of Therapies for Patients with Unmet Medical Needs

WASHINGTON DC-----The National Organization for Rare Disorders (NORD) supports proposed legislation introduced this week by Representatives Cliff Stearns (R-FL) and Edolphus (Ed) Towns (D-NY) to accelerate the development of innovative therapies for people with serious or life-threatening diseases.

H.R. 4132, Faster Access to Specialized Treatments or the FAST Act, is designed to modernize and expand the Food and Drug Administration's Accelerated Approval pathway to encompass a broader range of diseases and encourage innovative drug development tools and strategies.

"We applaud Representatives Stearns and Towns for their leadership in introducing this much-needed legislation," said NORD President and CEO Peter L. Saltonstall. "There are millions of Americans with rare diseases who have no FDA-approved treatment. Accelerating the development of safe, effective therapies for these patients is a top priority for the rare disease community."

Saltonstall said Stearns and Towns have listened to the concerns of patients and have responded with legislation that will speed the approval of new therapies for patients with serious and life-threatening diseases, while also maintaining FDA's high standards for safety and efficacy. He said the bill also provides further clarity of the FDA approval process by codifying and modernizing the well-established Accelerated Approval program.

NORD also supports legislation introduced by Senator Kay Hagan (D-NC) in the U.S. Senate recently known as the TREAT Act. The Senate bill also is intended to enhance and expand the Accelerated Approval process, with additional provisions to promote development of treatments for unmet medical needs.

"Accelerated Approval" refers to a pathway at FDA that allows for earlier approval of drugs for serious, unmet medical need based on a surrogate endpoint or marker predicting clinical benefit. Subsequent testing must be done to verify the anticipated benefit.

Of the approximately 7,000 rare diseases, only about 250 currently have treatments approved by FDA. In the U.S., a disease is considered rare if it affects fewer than 200,000 Americans.

NORD represents the nearly 30 million Americans who have rare diseases. More than half of these patients are children, and most rare diseases are serious, life-altering or even life-threatening diseases.

Thank you for your support!

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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