Take action to Raise Awareness today, Rare Disease Day!

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.

This is an example of the email I sent Dr. Gary Noskin. Please feel free to copy and paste:

Dear Dr. Noskin,

"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 are contacting you requesting help with raising awareness of Trimethylaminuria (TMAU) and other difficult to control body and breath odor 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

your support in this matter is greatly appreciated.

Regards,

Here are other examples of emails. Please feel free to copy and paste and adding your own wording, mixing these up to create your own version.

Hello,

I am a patient, and someone that suffers from a disorder that manifests into body odor symptoms. On Rare Disease Day, I wanted to send you an email so that you can raise awareness with General Practioners. On numerous occasions, I have visited with someone for medical help and attention, but only receiving disbelief and humiliation.

Diseases such as:

· Trimethylaminuria

· Isovaleric acidemia

· Maple syrup urine disease

Any many more do EXIST. You may have received emails from patients around the world suffering from these disabling diseases. Any little bit of help from you today and this year simply by letting others know of these disease so that patients can be tested and well informed would be life changing for patients.

You are the lifeline for patients so I beg you to make a difference.

Thank You

Dear Senator____________:

I am writing to alert you to an issue that has a daily impact on nearly 1
in 10 Americans. Nearly 30 million men, women, and children in the U.S.
have rare diseases. All of us know someone with a rare disease. Many
rare diseases are serious and/or chronic. Many are life-threatening.
Even so, people with rare diseases often have trouble accessing the
medical or other services they need.

Today - February 29 - millions of people around the world are observing
Rare Disease Day with events and activities to focus attention on rare
diseases as a public health issue. In the U.S., more than 650 patient
organizations, government agencies, educational institutions, and
pharmaceutical/biotechnology companies have signed on as Rare Disease Day
Partners with the National Organization for Rare Disorders, the US sponsor
of the day.

In the U.S., a disease is considered rare if it affects fewer than 200,000
people. Some rare diseases such as Lou Gehrig's disease (ALS),
hemophilia, and sickle cell anemia, are well known to the public. Most are
not. You can imagine the loneliness of having a disease that most people
have never heard of, even many medical professionals. Additionally, there
are many rare diseases that medical researchers are not actively pursuing.

Most rare diseases still have no treatment. Of the nearly 7,000
identified by the National Institutes of Health, only about 200 rare
diseases have FDA-approved treatments. Individuals and families affected
by rare diseases feel alone and forgotten by our nation's healthcare
system, and often have to fight their own battles to obtain needed
treatment and services.

As a voter, I want you to know about the most pressing policy goals of
patients and families living with rare diseases. These include:

- fostering a culture of innovation that supports both the basic and
translational research necessary to create diagnostic tests and therapies
for all rare disorders

- expanding access to life-saving treatments that are already available in
the marketplace

- ensuring that the NIH & FDA have the resources needed to promote medical
innovation and protect the health and safety of the American public

- protecting insurance reforms, such as the elimination of annual and
lifetime benefits caps as well as the elimination of all policies that
would use a person's medical history or 'pre-existing conditions' to
determine access to care

- achieving coverage parity of treatments for all rare disorders
consistent with coverage standards for all life-saving treatments

I am a patient, and someone that suffers from a disorder that manifests
into body odor symptoms. On Rare Disease Day, I wanted to send you an
email so that you can raise awareness with General Practioners. On
numerous occasions, I have visited with someone for medical help and
attention, but only receiving disbelief and humilation.

Diseases such as:

• Trimethylaminuria
• Isovaleric acidemia
• Maple syrup urine disease

Any many more do EXIST. You may have received emails from patients around
the world suffering from these disabling diseases. Any little bit of help
from you today and this year simply by letting others know of these
disease so that patients can be tested and well informed would be life
changing for patients.

You are the lifeline for patients so I beg you to make a difference.

On behalf of the rare disease community in the United States, I thank you
for your attention and consideration.

Please make every effort to improve the lives of all people with rare
diseases.

Sincerely,

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 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