16 Reasons You Should Pay Attention to Rare Disease Day


Do you know someone living with a rare disease? Seeing as approximately 30 million Americans have one of the 7,000 diseases considered “rare,” odds are, you do.

With so many individuals and families affected by rare diseases, you might imagine an abundance of medical resources and support communities exist, but it’s quite the opposite. The National Organization for Rare Disorders (NORD) reports that for most rare medical conditions, no cures and few proven treatments are available, and many people affected by rare diseases have revealed they feel alone and struggle to explain to others what they’re going through.

Rare Disease Day is held on the last day of February every year to raise awareness, and this year, The Mighty teamed up with NORD to ask our Facebook communities what those 24 hours mean to them. Here’s what they had to say:

1. “Rare Disease Day is a day I feel acknowledged.” —Asdruval Melissa Cifuentes

acknowledged

2. “A chance that just one more person will become aware of adrenal insufficiency, which means one more person may help save my life.” —Lisa Anderson

3. “Rare Disease Day is a day where people can see this and realize the hardship of fighting something you know nothing about.” —Sumathy Lal

hardship

4. “A time [for] the parents who search for answers to the unknown.” —Diane Anderson

5. “Hope.” —DeAnna Wry

hope

6. “A day where the world stops and listens to what the rare community has to say … It’s our chance to create huge awareness and to show that having a rare disease is not that rare.” —Geraldine Renton

rare

7. “It means showing that statistics aren’t always right.” —Lizzie Dicamillo

8. “Rare Disease Day means advocating for my children.” —Olivia Howard

9. “It means appreciating and acknowledging the rare disorder(s) that make me, me.” —Keira Baccei

10. “Rare Disease Day for me is every day! It is just every minute of every day and pushing through ’til the next minute the next day… the next week, month, year, and to just hold on to hope!” —Mellonie Swinford

rare-every

11. “Rare Disease Day means one day where no matter what the numbers say, no matter how much I may be struggling, no matter how helpless those around me might feel, I am not alone.” —Amanda Leslie

numbers

12. “Sadness… since Margarita Day or Pizza Day will have more shares than Rare Disease Day. Sadness, that it takes having a rare disease or having someone close to you with a rare disease to even know this day exists.” —Suzanne Depaolis

13. “Separately each rare disease and their supporters are small in numbers, but together we are a large group of strong and mighty advocates.” —Amanda Buck

mighty

14. “One day, there will be a cure for all of us and no one will have to suffer.” — Meghan Bayer

15. “Rare Disease Day gave me the courage to share my story on Facebook, to put it out there to people who may have never have known of MMN [multifocal motor neuropathy].” —Brenda Weisbrod Perales

16. “Rare Disease Day means my child becoming part of a larger community of voices showing how beautiful rare is.”—Miriam Gwynne

my-child

What does Rare Disease Day mean to you? Let us know in the comments below.


Find this story helpful? Share it with someone you care about.


Related to Rare Disease

Why I Want You to Wear Jeans on February 29

My name is Sabrina. I’m 21 years old. I’m a dancer. I’m a giver. I’m an advocate. I love fiercely and relentlessly. You tell me I can’t, and I’ll show you I can. I’m a future pediatric oncology nurse. And though you may not know it just by looking at me, my body is constantly [...]

Please Stop Saying ‘At Least It’s Not Cancer'

As a young bride barely off her honeymoon, I was diagnosed with a rare illness and told I would be lucky to see the age of 30. My disease quickly took essential functions I never realized were a true privilege. Eating — biting into a delicious, juicy cheeseburger — abruptly become impossible. Now I had a tube. [...]

What I Want You to Ask Me About My Child's Rare Disease

When your child has a rare disease, it can be isolating. People may be afraid to ask questions and even back away from you. There are times when you’re sitting next to your child’s bed in yet another hospital room, seeing your child ill, in a lot of pain and waiting on an answer from doctors who [...]

To the People Who've Never Heard of My Rare Disease

“I had my kidney transplant in 1997,” I told the doctor. “And what was the cause of the kidney disease?” “It’s rare. It’s called Senior-Løken syndrome (SLS). Both my parents were carriers of the gene. The odds were one in four, and my younger brother and I both beat those odds, born the youngest of four.” Not [...]