Since NORD introduced it in the U.S. in 2009, Rare Disease Day has grown each year, thanks to the participation and support of our partners, ambassadors and supporters. This is a day for every member of the rare disease community to join together on behalf of our common goals. Here is a brief summary of highlights from each year and what we have accomplished, together!
Rare Disease Day US 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:
- 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
Media Stories and Blogs from Rare Disease Day 2014:
- ABC News: Texas Brothers Diagnosed With Rare, Deadly Disease
- Huffington Post: Patricia Richardson Offers Support On Rare Disease Day: ‘What You’re Going Through Is Not Rare’
- Yahoo! Health: Baby With Rare Disease Forgets to Breathe
- Parade: Two Children, One Rare Disease and Their Mother Who is Making a Difference
- Everyday Health: The Right Stuff: Actor Patricia Richardson on How PSP Grounded Her ‘Flying Tiger’ Dad
- Celebrity Extra: Interview: Patricia Richardson’s Cause That’s Close to Her Heart
- Rare Disease Report: School Events Commemorating Rare Disease Day
- My9 NJ: Residents Rally To Bring Awareness To Rare Diseases
- Liberty Voice: Rare Diseases Challenged in California
- Lewistown Sentinel: Rare diseases the focus of attention on Feb. 28
- Quad-City Times: Raising awareness on National Rare Disease Day
- We Are Greenbay: Actress Patricia Richardson
- Laurinburg Exchange: Vigil sheds light on rare disease
- Charlotte Observer: Huntersville mother wants attention for Rare Disease Day, Feb. 28
- Deseret News: Families, physicians at Rare Disease Day forum call for continued research
- Albert Einstein College of Medicine of Yeshiva University: Rare Disease Day Event Comes to Einstein’s “Main Street”
- Blog- Research! America Blog: Join NORD in Supporting Rare Disease Day!
- Blog- PharmaPhorum: Bringing the Patient Voice to the States
- Blog- PhRMA: Only by working together can we produce results that will have a very real impact on the lives of patients and families
- Blog- LillyPad: Rare Disease Day- A Day of Commitment
- Blog- Allsup’s Blog, All Things Disability: Why We Join Together for Rare Diseases
- Blog- Rare Disease Dialog: Our Shared Vision for Rare Disease Day
Rare Disease Day US 2013
Rare Disease Day 2013 had special significance in the U.S., because 2013 was the 30th anniversary of the Orphan Drug Act and of 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:
- 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 US 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.
Rare Disease Day US 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.
Rare Disease Day US 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.
Rare Disease Day US 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.