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History of the Day

Rare Disease Day 2016

In 2016, the U.S. saw more growth in Rare Disease Day from the previous year, making it the most successful campaign yet. The theme was, “Patient Voice”, and recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers. Some of the highlights included:

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  • Together, we planned and hosted 37 State House Events across the U.S., up from last year’s 32 State House Events
  • Advocates in all 50 states worked to get a state-issued proclamation for “Rare Disease Day”
  • The Senate passed a resolution declaring Feb. 29, 2016 “Rare Disease Day”
  • Hundreds of advocates convened at the National Institutes of Health and in Washington, D.C. to advance progress for rare diseases
  • More than 2,100 people and 279 state legislators & staff attended the State House Events, which featured participants from 202 organizations, 197 patient & caregiver speakers, 81 state legislative speakers, and 26 medical professional & industry speakers
  • #RareDiseaseDay: we achieved greater awareness through social media by working together to make the official, global hashtag trend on Twitter for the first time and on Facebook for the second year in a row
  • 4,000+ people shared photos and stories in the Handprints Across America® campaign
  • The official, global video was translated into 20+ languages
  • 85+ countries joined in solidarity with Rare Disease Day founder, EURORDIS, to make the voice of rare diseases heard, including first time participants Andorra, Aruba, Indonesia, Libya, Mauritius, Moldova, Tanzania, Tunisia, Uganda and Zimbabwe

Rare Disease Day 2015

2015 was a big and impactful campaign for the U.S. The theme was, “Living with a Rare Disease”, and paid tribute to the millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whos daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients. Some of the highlights included:

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  • Rare Disease Day trended on Facebook for the first time
  • The National Institutes of Health (NIH) hosted its first-ever Tweetchat in honor of Rare Disease Day
  • 30 rare kids took center court with  the NBA’s Utaz Jazz
  • Noah Coughlan embarked on his epic, 3,100-mile Run across America, from New York City to San Diego, to raise awareness
  • GameChanger hosted the first “Raid Against Rare Diseases” and raised $10,000
  • Give Rare, a day to fundraise for rare diseases, was established
  • Over 800 people signed up to support Rare Disease Day on this website and joined advocates in over 80 countries
  • We met with legislators in 32 State House Events
  • Governors in 36 states issued Rare Disease Day proclamations
  • The U.S. Senate passed a resolution designating February 28, 2015 as Rare Disease Day
  • Media coverage expanded with national press coverage
  • NORD and ABC News co-hosted the second annual Tweetchat, “Conquering Rare Diseases”
  • Lundbeck and NORD partnered on the 6th annual Raise Your Hand giving campaign for research and raised $10,000

Rare Disease Day 2014

The 2014 theme for Rare Disease Day was “Join Together for Better Care”. Thanks to the efforts of so many across the rare disease community, the 2014 campaign was characterized by expanded media coverage and increased participation across the United States. Some of the highlights included:

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  • The Senate issued a proclamation declaring February 28th Rare Disease Day
  • The media campaign had an overall audience reach of 268 million people!
  • TV personality, Patricia Richardson, participated in media outreach by filming a PSA, conducting interviews with Huffington Post Live, Everyday Health and Celebrity Extra, and along with a NORD staff member, completed an additional 26 interviews through a satellite media tour
  • NORD hosted a Tweet Chat with ABC News Health Producer, Dr. Besser
  • A real-time international count-down badge was developed and shared to show the arrival of Rare Disease Day around the world
  • Proclamations were issued in 25 states and State House Events occurred in 12
  • Over 95 events occurred in 37 states across the country
  • 1,800 organizations and individuals joined NORD to become Rare Disease Day Partners and individual supports
  • The high-school curriculum was made available in Spanish thanks to the FEDER (Federacion Espanola de Enfermedades Raras)
  • Over 225 photos were submitted to the Handprints Across America Gallery
  • NORD launched a Rare Disease Day US Twitter Profile
  • Videos and infographics were shared to help individuals spread awareness about what it is like to live with rare diseases

Rare Disease Day 2013

Rare Disease Day 2013 had special significance in the U.S., because 2013 was the 30th anniversary of the Orphan Drug Act and NORD. It’s an important time to reflect upon progress to date, future challenges and how to accelerate addressing the needs of the 30 million Americans with rare diseases. Some of the ways the day was commemorated included:

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  • President Obama sent a letter to the rare disease community about Rare Disease Day
  • More than 1,450 organizations and individuals signed up to be Rare Disease Day Partners and Ambassadors
  • Over 70 virtual and in-person events were submitted to this website, including at universities, medical institutions, hospitals, NIH and more
  • State House events occurred in California, Connecticut, Massachusetts, New Jersey, and Texas
  • Media coverage included major stories on ABC, CBS, CNN, the Huffington Post, Good Morning America, and many blogs and local news stations
  • NORD’s Vice President of Communications participated in 28 TV and radio interviews through a satellite media tour
  • Letters were submitted to elected officials in all 50 states and all Congressional districts through our 24-hour “Handprints on the Hill” campaign
  • Resolutions were passed in both the House and the Senate designating February 28, 2013 as Rare Disease Day
  • Over 200 pictures were submitted to the Handprints Across America Gallery
  • Over 50 researchers were added to the Rare Disease Research Hall of Fame

Rare Disease Day 2012

  • More than 1,290 organizations and individuals signed up to be Rare Disease Day Partners and Ambassadors.
  • Over 50 events from 15 states were submitted to this website, including an educational event at the Massachusetts State House, awareness events in several states, and many events that featured research.
  • FDA hosted its first-ever rare disease patient advocacy day, NIH sponsored a research symposium, and NORD hosted a patient reception in conjunction with these events.
  • Media coverage included major stories on ABC News and CBS News websites, Reuters, Yahoo Health, Marketwatch, and industry media such as the PharmExec blog.
  • NORD’s RN participated in 27 TV and radio interviews through a satellite media tour, as well as an interview with the Wall Street Journal radio network.
  • More than 16,000 letters were submitted to elected officials through our 24-hour “Handprints on the Hill” campaign.
  • Senator Kay Hagan (NC), the sponsor of the TREAT Act introduced in the U.S. Senate, issued a press release in support of Rare Disease Day.
  • Senators Sherrod Brown (OH) and John Barrasso (WY) submitted Senate Resolution 383 designating Feb. 29, 2012, “Rare Disease Day” across the U.S. and many Members of Congress issued statements of support for the day.
  • Over 200 pictures were submitted to the Handprints Across America Gallery.
  • NORD and a Sarah Lawrence genetic counseling master’s degree student developed a curriculum supplement on rare diseases for high school biology classes that was downloaded by nearly 200 teachers.
My daughter Esmé has a rare genetic form of epilepsy known as PCDH19 Female Limited Epilepsy (FLE) that causes drug-resistant clustering seizures and a range of developmental delays. She is one of approximately 200 known cases world-wide. Esmé has extremely low tone, severe physical delay, and speech apraxia in addition to her seizures. It took us two years to find her diagnosis (and she may yet have another disorder too). Having such a rare disorder has meant that finding community and medical research has been difficult, so we make our own hope with our foundation The Cute Syndrome Foundation

Rare Disease Day 2011

  • Rare Disease Day 2011 touched minds, hearts and souls across the nation. Here is just a brief sampling of events and activities:National and State Resolutions: The U.S. Senate adopted, by unanimous consent, a resolution designating February 28, 2011, Rare Disease Day across the U.S. Additionally, proclamations and/or resolutions were issued in all 50 states for the day.
  • Media Coverage: Online coverage of Rare Disease day included articles on Yahoo Health, WebMD, and numerous other websites. TV and radio coverage included interviews in many cities and on the Dennis Miller show.
  • Increased Partnerships: There were 548 Rare Disease Day Partners, representing governmental agencies, the media, patient organizations, professional medical societies and industry.
  • Connecting via Social Media: Over 11,000 people connected with Rare Disease Day via Facebook, and many shared patient stories on the Rare Disease Day website.
  • Research: NIH hosted an all-day conference focusing on research and development of treatments, and other public agencies and private companies held symposiums.
  • Teaching Opportunities: Teachers and students ranging from high schools to graduate schools found ways to increase awareness through classroom and campus activities focused around Rare Disease Day.
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Rare Disease Day 2010

In 2010, we built upon the success of 2009 and expanded our efforts. Excitement and participation spread coast to coast and across the Internet. Highlights included:

  • Rarediseaseday.us was launched.
  • More than 350 groups signed on as Rare Disease Day Partners.
  • Governors in 40 states issued proclamations.
  • More then 3,700+ participants were engaged on Facebook.
  • Patient stories appeared on ABC News, blogs, editorials, newspapers and many other websites.
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Rare Disease Day 2009

Rare Disease Day 2009 was the first year the day was observed in the U.S. NORD launched this observance after EURORDIS had initiated Rare Disease Day in Europe the previous year. Some of the highlights included:

  • More than 200 organizations, agencies, and companies signed on as Rare Disease Day Partners.
  • Governors of 39 states issued proclamations.
  • Many websites, newspapers, and other media published editorials, letters to the editor, stories, and blogs.
  • Companies hosted events such as “Lunch & Learns” for their employees.
  • Patient organizations organized networking events.
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