Please click on this linkSee 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 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:
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:
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.
(SEE EXAMPLES OF EMAILS at MEBO's main blog)
Thank you for your support! As in the past, when we organize and take action as an organized international community, people take notice. Please be a part of this.
María
María de la TorreFounder and Executive Director
A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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