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Rare Disease

We Quarantined Our Family To Protect Our Daughter -- Here's Why

Glenn O'Neill | Posted 10.30.2014 | Parents
Glenn O'Neill

Family time, as it is for many people, used to be limited to nights and weekends. We now get tons of time together, but our days like this are quite literally numbered. Each new day is a step backwards for my daughter.

The Extreme Measures We're Taking To Try To Save Our Daughter's Life

Cara O'Neill | Posted 10.30.2014 | Parents
Cara O'Neill

My husband and I can't help but wonder if we're doing the right thing. Given the normal course and degenerative nature of Sanfilippo Syndrome, now is Eliza's best time to actually be able to do things out in the world. With our decision to not go out, we are taking those experiences away.

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.

Diagnosing The First Patient: Genomics To The Rescue

Techonomy | Posted 09.22.2014 | Science
Techonomy

Nic Volker. Beatrice Rienhoff. Alexis and Noah Beery. If you happen to be a scientist or clinician in the genomics field, you already know the topic of this article just from those four names. Each is a child who suffered from a mysterious or even one-of-a-kind disease.

Waiting to Live: Fighting an Insurance Company for a Life-Saving Surgery

Kirsten Palladino | Posted 04.21.2014 | Healthy Living
Kirsten Palladino

I have a responsibility to myself and to my family to strive for living. And I believed that my insurance company had a responsibility to honor the comprehensive plan my self-employed wife and I have been earnestly shelling out hundreds of dollars for on a monthly basis.

How We See in the Dark: A Blind Chef & the Recipe for a Miracle

Victoria Jackson | Posted 07.17.2013 | Impact
Victoria Jackson

If you've been hungry lately for some soul-charging inspiration -- or for a cookbook by a true Master Chef -- I highly recommend Christine Ha's Recipes from My Home Kitchen.

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.

PHOTOS: Family Raises Awareness Of Baby's Incurable 'Worst Disease You've Never Heard Of'

Posted 08.27.2012 | Impact

Imagine, as a parent, not being able to touch and hold your baby. Two parents are on a mission to raise awareness for their little girl's little-known...

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...

Rare Condition Leaves Teen Hungry But Unable To Eat (VIDEO)

Posted 11.17.2011 | Healthy Living

Doctors and family members thought Gentrie Hansen had an eating disorder after she lost 30 pounds in seven months. Turns out she has a rare disease. Watch her interview on TODAY.

Is It Time We Paid More Attention To Rare Diseases?

TIME | Posted 11.17.2011 | Healthy Living

Treating these diseases puts a burden on health services and living with them can destroy families--losing a loved one is a tragedy, no matter if it's...