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Archives for: March 1st, 2020

Los Angeles, California Rare Disease Day 2020

Written by Sean Roberts on March 1, 2020

California Rare Action Network Rare Disease Day 2020

Sunday, March 1 at 12:30pm

Los Angeles Clippers present NORD as Non-Profit of the game
at the Staples Center, 1111 S Figueroa Street, Los Angeles, CA 90015

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Be Fierce Glow Gala

Written by Sean Roberts on February 29, 2020

Let’s Glow!

Join Be Fierce Foundation for a one-of-a-kind blacklight family-friendly party to help bring awareness to kids and families battling rare diseases.

Feb. 29, 2020 is Rare Disease Day, so we’re going big for FIERCE kids!

Wear… Read More

Rock The Causebah Concert Fundraiser in Austin, Texas

Written by Sean Roberts on February 29, 2020

ROCK THE CAUSEBAH

Fundraiser Concert for Rare Diseases

February 29, 2020 from 5:30pm-11:00pm

The North Door, 501 Brushy Street, Austin, Texas 78702

Live music, food, and an auction of amazing prizes from 5:30pm – 11pm. All ages are… Read More

Savannah’s Story in honor of Rare Disease Day

Written by Valaree DonFrancesco on February 29, 2020

I suffer from neuromyelitis optica, or NMO disease (sister of MS, also known as Devic syndrome) and chronic pain. I experienced my first attack in the summer and now am in the thick of my second one (a relapse), and… Read More

Bridget’s Story in honor of Rare Disease Day

Written by Valaree DonFrancesco on February 29, 2020

I was diagnosed with afibrinogenemia when I was just one day old. The day I was born my heel sticks would not stop bleeding, which immediately had the delivering doctor puzzled. I was then rushed to a different hospital, four… Read More