Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
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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 Fabry disease, cystic fibrosispulmonary hypertension, 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.

The campaign is encouraging a stout social media presence, suggesting use of the hashtag #RareDiseaseDay and tag @rarediseaseday. The official campaign also is on Facebook, Twitter, and YouTube.

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.

Readers may follow the Global Genes team on Instagram, Facebook, LinkedIn, and Twitter this month.

“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:

Other listings include:

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.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Ana holds a PhD in Immunology from the University of Lisbon and worked as a postdoctoral researcher at Instituto de Medicina Molecular (iMM) in Lisbon, Portugal. She graduated with a BSc in Genetics from the University of Newcastle and received a Masters in Biomolecular Archaeology from the University of Manchester, England. After leaving the lab to pursue a career in Science Communication, she served as the Director of Science Communication at iMM.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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