US Senate Passes bipartisan Resolution for Rare Disease Day

On February 28, 2014 in U.S. Senator Brown's (D-OH) newsroom press release website, it is announced that a bipartisan resolution led by Senator Sherrod Brown and John Barrasso (R-WY) was passed in Washington, D.C., that would recognize the last day of February as "National Rare Disease Day," "to raise awareness of, and provide support for, the 30 million Americans living with a rare and potentially life-threatening disease or disorder.

Every day 30 million Americans, including too many children, have to live with life-limiting and sometimes life-threatening rare diseases," Brown said. "National Rare Disease Day is an opportunity for Congress to bring attention to these brave Americans, increase awareness about rare diseases, and help us understand the need for advances that can lead to prevention, effective treatments, and cures."

We are most grateful to Senators Brown and Barrasso for showcasing our cause.

We are also most grateful for the fine work done by the National Organization for Rare Disorders (NORD) and EURORDIS, The Voice of Rare Disease Patients in Europe, for representing all its rare disease member organization, including MEBO, and for spearheading the annual Rare Disease Day events around the world. We are very excited and proud to be a part of this movement.

Everyone is encouraged to register in the RareConnect website, Trimethylaminuria (TMAU) Community. Of particular interest is their wealth of information found in their "Learn" section's Documents and Articles (see tabs). RareConnect is a partnership of EURORDIS and NORD in which many sufferers have found it beneficial to participate in. RareConnect has also sponsored the many webinars that our experts have volunteered to do for us, such as,

• Professors Elizabeth Shephard, PhD
• Professor Ian Phillips, PhD,
• Dr. Robin Lachmann, M.D.,
• Dietician Charlotte Ellerton,
• Dietician Heidi Chan,
• Dr. Richard Mackay, FRACP, FRCPA, Clinical Biochemist,
• George Preti, PhD.,
• Paul Fennessey, PhD.,
• Danielle Reed, PhD,
• Dra. Mercedes Serrano Gimare, M.D.

These webinars are filled with very valuable information for our community, to which we owe kuddos to RareConnect for making it available to us. Please support this movement by registering with RareConnect today.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

---

SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

Please use your credit card to make your donation.

A EURORDIS and NORD Member Organization