In September 2009, a health sciences lecturer from California State University, Fullerton wrote to NORD with the following message: “I’m 50 years old. I’ve recently been diagnosed with an incurable rare disease – Wegener’s granulomatosis. And I’m planning to climb Mt. Everest in the spring to raise awareness on behalf of all people living with rare diseases.”
That’s was NORD’s first introduction to Cindy Abbott and we have come to know her well since then. Cindy did, in fact, climb Mt. Everest in April 2010, and she carried to the summit a Rare Disease Day banner given to her by NORD.
The following year, Cindy carried the same banner far below the ocean’s surface in a scuba dive also to promote rare disease awareness. And this year, she carried her NORD banner across 1,000 miles of Alaskan wilderness, completing the Iditarod after two previous attempts ended prematurely as a result of injuries and exhaustion.
Cindy is driven by a desire not to let her disease define her and to raise awareness for NORD, the Vasculitis Foundation (a NORD member), and the millions of other people living courageously with challenging rare diseases.
Cindy has written a book about her adventures in which she presented the philosophical basis for her exploits: “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.”
She has also conducted numerous media interviews and is the subject of a documentary film released earlier this year in which Emmy® Award-winning actress Valerie Harper – known to many as Rhoda Morgenstern – serves as host and narrator.
NORD is proud to present to Cindy our first-ever Rare Disease Public Awareness Award. Her determination to live life to the fullest in the face of a very serious and little-understood disease brings hope and inspiration to millions of others.
The final 2015 State House Event took place yesterday. Now that all of the numbers are in, take a look at (and share!) this year’s highlight reel & recap:Together, we planned and hosted 32 State House Events in capitol buildings across the U.S., up from last year’s 12 State House Events
With all of our efforts, Rare Disease Day continues to grow! Thank you to everyone who planned and attended events, joined the social media campaign, changed their profile photos, shared infographics, and got involved. As the official U.S. sponsor of Rare Disease Day, NORD thanks everyone who came together to support this truly community and group effort. Together, we are strong!
Keep the Momentum Going read more >
Rare Disease Day is here! Celebrated on the last day of February–the rarest day on the calendar–this is the one day every year when the world comes together to improve the lives of people living with rare diseases.
NORD is proud to work with our partners as the official sponsor of Rare Disease Day in the U.S. Here are a few ways you can get involved to help make this the most impactful Rare Disease Day yet.
Social media awareness - Together we can grow awareness. Change your profile picture to the ”I SUPPORT Rare Disease Day” badge (pictured) and encourage others to do the same. Share photos, updates and videos using the hashtags #RDD2015, #RareDiseaseDay and #1in10. You can find us on Twitter @RareDayUS, Facebook /RareDiseaseDay.US and instagram @rarediseasedayUS.
Son of Actress Audrey Hepburn Donates Proceeds from New Book and Serves as
Rare Disease Day® Ambassador 2015 on February 28
Washington D.C.—February 18, 2015—Actress Audrey Hepburn died of a rare type of cancer and it was the way she lived her life that inspired her son, Sean Hepburn Ferrer, to become an advocate for all people with rare diseases.
“My mother believed strongly that every life matters,” Ferrer says. “She demonstrated on a daily basis, particularly through her humanitarian work as a Goodwill Ambassador for UNICEF, her strong belief in the value of every life.”
As part of this effort, Ferrer is an advocate for the National Organization for Rare Disorders (NORD), a leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases in the U.S., and its European counterpart, EURORDIS. He serves as Rare Disease Day® Ambassador 2015, an international awareness raising event that will be celebrated on February 28.
Ferrer will donate proceeds from his new children’s book, MAURICIO OF URUGUAY, to NORD and EURORDIS. The book tells the life story of Ferrer’s friend, Mauricio Saravia, an artist, poet and musician who lived a full and deeply impactful life and who had a rare genetic disease known as McCune-Albright syndrome. Born in Montevideo in 1970, he had his first art exhibition at age 20 and published his first book of poetry at age 21. He died in Hollywood when he was just 38 years old but, through his art and life, touched many lives. read more >
By Lisa Phelps, NORD Director of Marketing & Community Relations
With every New Year comes the resolve of individuals to better themselves in one or more ways. But after the ball has dropped and the confetti is swept away, it’s difficult for 75% of people to remain committed to their resolutions beyond the first week!
This year, consider a resolution to which you can remain committed: Resolve to better the lives (and chance at life) for 30 million individuals – not just one.
Rare Disease Day is only eight weeks after New Year’s Day, falling on February 28, 2015. On this one-of-a-kind day, communities around the world will gather together to raise awareness among the general public and decision-makers about the 7,000+ rare diseases and their impact on the lives of patients. Started by EURORDIS and brought to the US by NORD in 2009, this pivotal day has contributed to national plans and policies to better the lives of patients in over 80 countries.
The New Year’s Resolution: Become a Rare Disease Day Partner and join the 30 million Americans impacted by a rare disease to help patients, caregivers, and organizations working to advance the availability and delivery of information, research, education, treatment and care.
1. You Can Donate to support events and activities by patients and advocates
2. You Can Help Host a State House Event, or join one already in planning
3. You Can Share the Rare Disease Day Message with friends and decision-makers through social media, media/press, or in writing to your elected official
4. You Can Submit a Handprints Across America™ photo – using either your photo, or, if you’re feeling ambitious, find influential public figures to take a photo with the Handprints Across America™ handout! The most influential photo will be included in NORD’s 2015 media campaign with a story on the individual or group that submitted.
Let’s Achieve Our New Year’s Goals Together.
“Alone We Are Rare. Together We Are Strong.”™
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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