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Rare Disease Day

Blur: Inside my life as the parent of a child with a rare disease

Hillary Savoie | Posted 03.01.2017 | Parents
Hillary Savoie

Looking through the photos I took of my daughter this morning -- her in her pajamas leaning back against my thighs, my bare feet in the tangle of blan...

A Letter to Myself On Rare Disease Day

Eileen Flood O'Connor | Posted 03.02.2017 | Parents
Eileen Flood O'Connor

Give yourself a break. Don't feel guilty. Don't blame yourself and don't blame your husband. Don't blame the move to London or that you sometimes drank unfiltered tap water -- or a glass of wine. Don't blame the cups of coffee. Don't blame EU emissions standards. Do not blame Tony Blair.

Rare Disease Day: An Einstein Researcher's Personal Involvement

Albert Einstein College of Medicine | Posted 03.01.2017 | Healthy Living
Albert Einstein College of Medicine

February 29 marks the ninth annual Rare Disease Day, a worldwide event devoted to raising awareness of more than 6,500 rare diseases, of which less th...

No, It's Not Cancer -- It's a Rare Disease

Erin Havel | Posted 03.01.2017 | Healthy Living
Erin Havel

My family did not have other families to talk with, or survivors to hear from. I couldn't explain the pains I was feeling to anyone who understood what I was talking about. At the time, there was only one doctor we found to consult with, and he had very limited knowledge on the subject.

Photos Of Kids With Rare Diseases Show They're More Than Their Diagnoses

The Huffington Post | Caroline Bologna | Posted 02.26.2016 | Parents

As Rare Disease Day approaches, people around the world are focusing on those whose lives have been affected by less well-known conditions. UK-based p...

February 29th is Rare Disease Day: 4 Reasons You Should Care

Erica Barnes | Posted 02.26.2017 | Impact
Erica Barnes

A rare disease is defined by the National Institute of Health (NIH) as any disease that affects less than 200,000 people at a given time.

Bedtime Stories With A Rare Disease Mom

Melissa Hogan, JD | Posted 02.26.2017 | Parents
Melissa Hogan, JD

I couldn't read, "I love you, right up to the moon and back," without thinking that the moon would always be there, but my child would not.

Rare Disease Patients Fighting Isolation Through Social Media

Jim Luce | Posted 02.26.2017 | Healthy Living
Jim Luce

Every year Rare Disease Day takes place across the world and brings together anyone affected by a rare disease, patients, their families and caregivers. It also serves to raise awareness of rare diseases among policy makers, industry, researchers and health professionals.

Rare Diseases Are More Common Than You Think

Kaylene Ready | Posted 02.25.2017 | Impact
Kaylene Ready

Feb. 29 is a rare day, dedicated to an important cause called Rare Disease Day. It's okay if you haven't heard of it -- today is dedicated to some of the world's least known diseases, after all.

In Honor Of Rare Disease Day: Aren't We All Rare In Our Own Way?

Wendy Ferguson | Posted 02.24.2017 | Parents
Wendy Ferguson

Over time, I have learned that it is okay to be different and rare. Abby is a happy child, is well adjusted and does not even realize she is different. We are all different and we are all rare in our own way.

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...