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Archives for: July 29th, 2022

Rebekah’s Rare Story: How Mrs. Massachusetts Petite Spreads Hope & Awareness

Written by Julie Ostroff on July 29, 2022
Rebekah standing in front of a pink background wearing a crown and a sash that reads "Petite USA Mrs. Massachusetts." Image reads "Rebekah Britto Platform: National Organization for Rare Disorders (NORD) 'A disease may be rare but hope should not be.'"

I’m Rebekah Britto, Mrs. Massachusetts Petite 2022, and I have both Chiari malformation and Ehlers-Danlos syndrome (EDS). My rare disease journey began in 2013, when I started struggling with symptoms including passing out, vertigo, tinnitus, vision disturbances, and more. It took about a year of going back and forth between… Read More

Five Disorders: Dee’s Rare Story

Written by Rohan Narayanan on October 29, 2021

I have five rare disorders: Chiari malformation, intracranial hypertension, chronic Epstein-Barr virus (EBV), fibromyalgia, Hashimoto syndrome, along with a plethora of other illnesses. An infectious disease doctor once told me that I was a poster child for the medical field. However, my journey with rare disease began far before I was diagnosed in 2009. 

Living with a rare disease makes you grateful for everything that most people take for granted. Four brain surgeries… Read More

Beth Nguyen, R.N. – 2017 Rare Impact Award Honoree

Written by on March 15, 2017

2017 Honoree
Rare Impact Awards

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Beth Nguyen, R.N.

Mother, wife, nurse, patient, advocate, and leader; Beth Nguyen wears multiple hats, and not one loosely.

In 2007, before she began to experience health problems, Beth had a job she loved as… Read More

President Signs 21st Century Cures Medical Innovation Bill Into Law

Written by Jennifer Huron on December 13, 2016

president-signs-21st-cent-curesToday, President Obama signed into law the 21st Century Cures Act, a game-changing bill for medical innovation.  The bill includes many provisions that will improve the discovery, development, and delivery of orphan therapies for rare disease patients, including:

Senate Passes Landmark 21st Century Cures Act

Written by Jennifer Huron on December 7, 2016

Senate Passes Landmark 21st Century Cures Act

us-senateWashington, D.C., December 7, 2016—Today, the United States Senate overwhelmingly approved the 21st Century Cures Act, a game-changer for medical innovation, by a bipartisan vote of 94-5. The President is expected to… Read More