Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect.
Patients, caregivers, and advocates worldwide will sport denim ribbons and zebra stripes, paint their faces, contact lawmakers, flood social media platforms, participate in academic and community discussions, and hold fundraisers — all in the name of about 7,000 rare disorders. As many as 400 million people worldwide are estimated to have a rare disease.
A disease is defined as rare in the United States when it affects fewer than 200,000 residents at any given time. The criteria in Europe is fewer than one in 2,000.
Observed every year on the last day of February, Rare Disease Day seeks to raise awareness among the general public, as well as policymakers, public authorities, industry representatives, scientists, and health professionals. This year, the campaign’s key message is: “Rare is many worldwide, rare is strong every day, and rare is proud everywhere.”
Rare Disease Day began in 2008, and is coordinated internationally by Eurordis-Rare Diseases Europe, a patient-driven alliance of nearly 900 patient organizations in 72 countries, and 60 national alliances of rare disease organization partners. The effort that started as a European event has grown steadily to 104 countries; the U.S. joined in 2009.
The long-term goal of Rare Disease Day over the next decade is increased equity for patients and their families as it concerns diagnosis, treatment, care, and social opportunities. Rare diseases range from cystic fibrosis, pulmonary hypertension, pulmonary fibrosis, scleroderma, and sickle cell — to Angelman syndrome, Batten and Gaucher diseases, epidermolysis bullosa, fragile X syndrome, and spinal muscular atrophy, among many others.
“Equity in practice means meeting people’s specific needs and eliminating barriers preventing their full participation in society,” according to a fact sheet about the campaign.
To advocate for equity, the campaign suggests writing key community decision-makers about the needs of people with rare diseases, and inviting them to Rare Disease Day activities. It also suggests hosting a Rare Disease Day event that highlights a top local or national policy issue for the rare disease community, and using media attention on Rare Disease Day to launch a new initiative.
The official Rare Disease Day Information Pack includes topics such as event organizing, how to take action locally, and how to tell stories.
Because the zebra is the official U.S. symbol of rare diseases — its distinctive markings symbolizing both individual uniqueness and community commonality — the National Organization for Rare Disorders (NORD) is again promoting ways that individuals and organizations can “show their stripes” while raising rare disease awareness.
As the official U.S. sponsor of Rare Disease Day, NORD is offering a press kit and downloadable resources for help with local media, a social media toolkit, posters and logos, and tips for event hosting.
“The purpose of Rare Disease Day is to harness the creative energy of the millions of people around the world with rare diseases — and the millions who care about them — to raise awareness and generate action,” NORD states on its webpage.
Global Genes, a California-based organization that seeks to connect, empower, and inspire the rare disease community, suggests that patients check out its international events hub and wear the blue denim genes ribbon — a global symbol of hope for rare disease communities — to show support and raise awareness.
“We work to empower the more than 400 million patients with rare diseases as well as caregivers and everyone affected,” Kimberly Haugstad, Global Genes CEO, said in a statement. “Visibility is a requirement. It makes it easier to connect and collaborate with people who can help to develop treatments and cures for the more than 7,000 rare diseases.”
‘What Makes Me Rare’
Meanwhile, BioNews Services, which publishes this website, is marking Rare Disease Day through a social media campaign called “What Makes Me Rare.” Through Feb. 29, it’s inviting people to send stories and videos about their experiences using the hashtag #whatmakesmerare. Some columnists, including Jenny Livingston, also are promoting the effort in BioNews’ patient forums.
“It is a day when we shout loud and proud to the world that we have forged uniquely powerful identities through the odysseys of our conditions,” wrote Livingston, who has cystic fibrosis. “It’s the day we demand more awareness, more action, more compassion. Let’s flood the Internet with our voices to make our strength known!”
Those who wish to submit videos or stories about what makes them rare should email them to [email protected] with “What Makes Me Rare” in the subject line. Participants are are also encouraged to post on their Instagram account and tag BioNews using a disease-specific hashtag. For example, those with cystic fibrosis (CF) would use #whatmakesmerareCF.
Contributions will be posted on BioNews’ disease-specific social media platforms, including Instagram and Facebook.
Elsewhere, the rare disease series “Behind The Mystery: Rare and Genetic Diseases” is launching a social media educational campaign to elevate the voices of the rare disease community. Through February, the video segments will feature patients who will share their experiences living with a rare disease, along with families and physicians.
The disease series, which highlights the emotional, scientific, and medical aspects of living with a rare disease, airs on the Lifetime morning TV show, “The Balancing Act.” The educational effort is being rolled out on Twitter, LinkedIn, Instagram, Facebook, and YouTube.
“After eight years of raising awareness about rare and genetic diseases, we decided it was time to tell the world the reasons behind the work we do,” Carri Levy, creator of “Behind The Mystery,” said in a statement. “Through this campaign, we’re highlighting the people who create Behind The Mystery, and sharing our motivation for working so hard to raise awareness. Rare disease is our passion because we live it every day.”
Throughout the U.S., official Rare Disease Day activities include:
- A Rare New England speaker series for the medical community through March 6
- Third annual Perthes Kids Rare Art Contest through Feb. 29
- Rare Disease Day Virtual Race, hosted by Running On Air
- A presentation about rare disease research at Yale University, Feb. 26 at Yale New Haven Hospital
- Beyond the Diagnosis art exhibit through March 30 at the Broad Institute of MIT and Harvard in Cambridge, Massachusetts
- $29 on the 29th fundraiser by the Little Zebra Fund to support genetic testing
- Second Annual World Rare Disease Day Rally of Charlotte, Feb. 22, hosted by the Rare & Undiagnosed Network of Charlotte in North Carolina
- Third annual Alabama Rare Disease Patient/Caregiver Symposium, Feb. 22, hosted by Alabama Rare
- See Rare Run’s third annual virtual race and fundraiser, Feb. 23, to benefit NORD
- A Soft Bones Southwest presentation for hypophosphatasia patients, family, and caregivers, Feb. 27–29 in Gilbert, Arizona
- Second Annual Rare Disease Day at Police Headquarters, Feb. 28, New York City
- Rare Disease Day Symposium, Feb. 28, North Haven, Connecticut, hosted by Quinnipiac University
- Rare Disease Day 2020, Feb. 28, Chapel Hill, North Carolina, hosted by the UNC Catalyst for Rare Disease
- Focus on Rare Disease: Putting Patients in the Driver’s Seat, Feb. 28, a presentation hosted by the Broad Institute of MIT and Harvard
- Rare Disease Day at the National Institutes of Health, Feb. 28 in Bethesda, Maryland, featuring panel discussions and more
- Rare Disease Day celebration in Austin, Texas, Feb. 28, hosted by the Firefly Fund
- Robius Middle School Rare Disease Day Fun Run, Feb. 28, in Midlothian, Virginia
- Race for Ryland fundraiser for NORD, hosted by Ryland Grace Memorial, Feb. 29, San Antonio, Texas
- 2020 Vegas Cares About Rare Kids 5K, Feb. 29, Henderson, Nevada, hosted by the Little Miss Hannah Foundation
- Rare Disease Day Symposium 2020, Feb. 29, Grand Rapids, Michigan, Calvin University.
- Los Angeles Clippers For Rare Disease Day, March 1, Staples Center, Los Angeles
- Topgolf Tournament for Myotonic, March 1, Columbus, Ohio, hosted by Myotonic
Other listings include:
- Rare Disease Day: Mission 2020 family event, hosted by NORD, Feb. 29 at the International Spy Museum in Washington, D.C.
- Nevada Rare Disease Day 2020, Feb. 21, Las Vegas, Nevada
- Patient Empowerment Network Rare Disease Day tweetchat, Feb. 21
- New Jersey Rare Disease Day 2020, Feb. 24
- Fourth annual Rare Disease Day event, hosted by NYC Health + Hospitals, Feb. 27
- Colorado Rare Disease Day 2020, Feb. 27
- New York Rare Disease Day 2020 at the Capitol, Feb. 27
- Ohio Rare Disease Day 2020, Feb. 27
- Georgia Rare Disease Day 2020, Feb. 28
- Run for the Rare, Feb. 29, Salem, Oregon
- Genetics Pop-Up, Aurora, Colorado, Feb. 29
- Tucson, Arizona Rare Disease Day 2020, Feb. 29
- Texas Rare Disease Day 2020, Feb. 29
- New Hampshire Rare Disease Day Luncheon, Feb. 29
- Oklahoma Rare Disease Day 2020, Feb. 29
- Wisconsin Rare Disease Day 2020, Feb. 29
- Arkansas Rare Disease Day 2020, Feb. 29
- Rare Disease Day San Jose, California , Feb. 29
- Rare Disease Day NYC, Feb. 29
- Rock the Causebah Concert Fundraiser, Austin, Texas, Feb. 29
- Be Fierce Glow Gala, Feb. 29, San Antonio
- Oakland, California Rare Disease Day 2020, March 1
- Coriell Institute Rare Disease Day, Camden, New Jersey, March 2
- Illinois Rare Disease Day 2020, March 4
- Massachusetts Rare Disease Day Community Event 2020, March 4
Go here to submit a U.S. event.
There’s also no shortage of events around the world.
In Montreal, Quebec, for example, the McGill University Health Centre’s Consortium For Rare Disease Research will host a Feb. 28 event to showcase some of its rare disease programs.
Reykjavik, Iceland, is the site of a Feb. 28 conference about rare disease in youths, hosted by the support group Einstok Born.
In Ghana, the Rare Disease Ghana Initiative will host a Rare Disease Showcase Feb. 27–29.
A list of global events, by country, can be viewed here.