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Rare Disease Day

February 28, 2015 Is Rare Disease Day

Alexis Buryk | Posted 04.29.2015 | Impact
Alexis Buryk

And how do I know that? My 26-year-old fraternal twin daughters were diagnosed with Late Onset Tay-Sachs this past November.

Rare Cancer Inspires Rare Partnership

C. Ugent | Posted 10.26.2014 | Impact
C. Ugent

The nonprofit Double Hit Lymphoma Foundation was born, and Jill and Dr. Petrich established their mission: Increase awareness of double hit lymphoma; provide information, tools and connections that make a cancer journey more manageable, with fewer surprises and unknowns; and raise funds for double hit lymphoma research.

Common Cure for Rare Diseases: Knowledge

NYC Dads Group | Posted 04.30.2014 | Parents
NYC Dads Group

Today, February 28, is Rare Disease Day, an annual international event that aims to raise awareness about the thousands of under-the-radar diseases that significantly impact people's lives. My daughter is one of those people.

I Made This Baby

Suzanne Perryman | Posted 04.30.2014 | Parents
Suzanne Perryman

We never planned to have more kids, but we were so happy as a family, we never really planned not to.

'What You're Going Through Is Not Rare'

The Huffington Post | Amanda L. Chan | Posted 02.28.2014 | Healthy Living

Rare disease. Based on those words alone, it's easy to think a rare disease automatically translates to a rare experience: battling a condition th...

All I Want for Ramadan Is My Own Mutation

Janine Jagger, M.P.H., Ph.D. | Posted 01.23.2014 | Science
Janine Jagger, M.P.H., Ph.D.

Demoralized and despondent, I was back in my doctor's office for the umpteenth time in three years. Dr. Schorling walked in looking unsuitably chipper holding a scrap of paper torn from a note pad. So far all diagnostic roads led nowhere.

What We All Need to Learn From Rare 'Orphan' Diseases: The Path to Progress

Victoria Jackson | Posted 04.28.2013 | Impact
Victoria Jackson

February marks progress in overturning terrible odds. The landscape has changed. Drug companies more and more recognize that rare diseases have provided some of the most important medical breakthroughs on record. The therapies they're funding are finding new and more applications.

To Be Rare Or to Be Neglected: For a Disease, That Is the Question

Dr. Layla McCay | Posted 05.01.2012 | Healthy Living
Dr. Layla McCay

In terms of the science, it seems that "rare diseases" are more likely to be neglected than so-called "neglected tropical diseases." Perhaps in terms of NTDs, it's not the diseases but the people who have been neglected?

Extending Rare Disease Awareness Beyond Just One Day

John J. Castellani | Posted 05.25.2011 | Home
John J. Castellani

We don't yet have the answers. But we hope that awareness of rare diseases extends beyond a single day, drawing attention not just to the diseases, but to the challenges.

Are You Aware? 21 Rare Diseases

Posted 05.25.2011 | Home

February 28 is Rare Disease Day -- a day organized by EURODIS, the European Organisation for Rare Diseases, as well as like alliances across the globe...