MEBO talks to US President on NORD Conference Call

As an Organization Member of the National Organization for Rare Disorders (NORD), MEBO was invited to a

Conference call with the President of the United States, Barack Obama, and the Health and Human Services Secretary Kathleen Sebelius

on Monday, September 16, at 1:40pm EDT to discuss the October launch of the Health Insurance Marketplace. Of course, as members of NORD, our focus will be on how this will affect Rare Disorders, including TMAU and other body and breath odor conditions. Our very own MEBO Community Outreach Director, Cheryl Fields, MBA, PhD (ABD), Human Resources Consultant, was granted a reserved space to join the call to represent our cause.

Our entire international community is most grateful to Cheryl for stepping up to represent us. We look forward to hearing her account of this experience, which will be posted in this blog. The MEBO goal to bring our cause to our political leaders has reached the highest levels in the US government, and I hope that good relationships can be established with this opportunity for future communications. We have reached great heights as an organized community with this opportunity, and we thank NORD for making it happen for us.

Cheryl, remember that you have our whole community praying and thinking of you on Monday afternoon, in camaraderie and support. All the best to you!

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)

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A EURORDIS and NORD Member Organization 

Trimethylaminuria community group on RareConnect website

WEBSITE FOR RARE DISORDER
PATIENT COMMUNITIES

TMAU pages on RareConnect website

The RareConnect website is a partnership of NORD, a U.S. National Organization for Rare Disorders, and EURORDIS, a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases. The purpose of this website is to connect rare disease patients globally. The website itself is a place where sufferers, sufferer organizations, and those related can join to communicate, as well as being a one-stop place to learn about the disorders.

We are happy to say that trimethylaminuria (TMAU) is one of the disorders that has a place in this site for our international community. Trimethylaminuria (TMAU) pages on Rare Connect website.

All sufferers and sufferer organizations are welcome to register and become a member of this site that offers a wide web of connections with rare disease sufferers throughout the world, language services, news on community services, political connections and endeavors, special projects, and much more. You may choose whichever language you are most comfortable with, such as German, English, Spanish, French, or Italian to register. Please feel free to write your personal testimonial if you like, under the "Call for stories" article written by the RareConnect team. Stories can be submitted anonymously to webmaster@rareconnect.org.

Please note that this is not a MEBO Research site, though MEBO is a NORD Organization Member and a RareConnect member, and all the currently registered patient groups look forward to uniting with the rest of our international community's sufferer organizations, forums, and individuals wishing to get together under the hospice of these two great organizations through RareConnect. So please do register individually or under your organization's name.

THANKS TO ALL WHO PARTICIPATE
from around the world!

María

María de la Torre
Founder and Executive Director
A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)

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A EURORDIS and NORD Member Organization

Take action to Raise Awareness today, Rare Disease Day!

Please click on this link
See examples below of emails written today.
Please feel free to copy and paste excerpts to create your own.

TODAY IS THE DAY TO TAKE ACTION
AS A UNITED COMMUNITY!

As mentioned in previous posts, our international community at MEBO Research and all sufferers from around the world have been "called to arms" to prepare to join the National Organization for Rare Disorders (NORD) and Eurordis in important advocacy initiatives organized for the Rare Disease Day, today, February 29, 2012. MEBO urges sufferers to take a moment to participate in the two mass email/mail campaigns aimed at the authorities in the US and UK that could be most influential in assisting us in our quest to initiate research and find a cure.

**You may include a link to the TMAU paper written by Dr. Elizabeth Shephard for MEBO Research, http://www.meboresearch.org/Trimethylaminuria%20Paper%20by%20Dr.%20Elizabeth%20Shephard.pdf **

CONTACT YOUR GOVERNMENT OFFICIALS IN THE UNITED STATES:

"In solidarity with EURORDIS and NORD""

By following the easy steps in this virtual tool, you can let your elected officials know that rare diseases are important to you! NORD has provided a sample letter for you, ready-to-go, though we certainly encourage you to take an extra moment to personalize your message and make it resonate.

Once you complete this action alert, your message will be instantly and electronically sent, though you have the option to print and mail your message if you prefer. You may choose to send your message to:
- The President and Vice President of the United States
- The two Senators who represent you in the US Senate
- The Congressperson who represents you in the US House of Representatives
- Your State's Governor and Lt. Governor
- Your representatives in your state's legislature

CONTACT YOUR GOVERNMENT OFFICIALS IN THE UNITED KINGDOM:

This is an example of the email you can send. You can either copy and paste it, or modify it to say whatever else you may want to say:

"In solidarity with EURORDIS and NORD"

TMAU and other foul-odour-producing metabolic/systemic disorders (which, unfortunately, are still un-named) are very highly under-diagnosed conditions. TMAU (and other odour disorders) are considered rare disorders. However, the fact that they are so rarely diagnosed is a key issue. We have contacted you before requesting help with a simple task – raising awareness of TMAU and odour conditions primarily amongst the medical professions. We ask you now, on this day which recognises rare diseases, to reconsider the plight of sufferers of this devastating, invisible disability. If our existence continues to be ignored, research is less likely to occur and a cure will not be found. It is our right to be heard on this day and to protest against the social rejection and dismissive attitudes we face.

Below is a raising awareness petition devised by MEBO Research which can be signed (anonymously) by any individuals who believe that sufferers of odour disorders have the same human rights as other human beings.

http://www.meboblog.com/2011/06/raising-awareness-and-research-funding.html

UK Contacts

Royal College General Practitioners
circ@rcgp.org.uk
chair-circ@rcgp.org.uk
chiefexecutive@rcgp.org.uk
president@rcgp.org.uk
chairman@rcgp.org.uk
vicechair@rcgp.org.uk
chair-scottish-counc@rcgp.org.uk
nedmunds@rcgp.org.uk
chairmanni@rgcp.org.uk
international@rcgp.org.uk
ppgchair@rcgp.org.uk
NSparrow@rcgp.org.uk
rpalmer@rcgp.org.uk
doliver@rcgp.org.uk
pnewman@rcgp.org.uk
swest@rcgp.org.uk

Royal college of Physicians
Humphrey.Hodgson@RCPLondon.ac.uk
education-courses@rcplondon.ac.uk

General Medical Council
education@gmc-uk.org
gmc@gmc-uk.org
publicatons@gmc-uk.org
gmctoday@gmc-uk.org

Media
thismorning@itv.com


Medical Research Council
Linda.Willmott@headoffice.mrc.ac.uk.

NPSA
enquiries@npsa.nhs.uk
queries@nres.npsa.nhs.uk


Health MPs
lansleya@parliament.uk
simon.burns.mp@parliament.uk
dhmail@dh.qsi.gov.uk
anne.milton.mp@parliament.uk

Dental Orgs.
enquiries@bda.org
dentalbranch@dhsspsni.gov.uk
wag-en@mailuk.custhelp.com
fgdp@rcseng.ac.uk
editor@badn.org.uk

USA Infectious Diseases Division Office, Northwestern University
gnoskin@northwestern.edu
Gary A. Noskin, MD Professor, Medicine, Infectious Disease Division at Northwestern University.