Pandemic Won’t Stop Rare Disease Day on Feb. 28

Pandemic Won’t Stop Rare Disease Day on Feb. 28
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Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. 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 virtual fundraisers — all in the name of more than 6,000 identified rare disorders.

More than 300 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 annually 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. Due to the global pandemic all activities this year will be virtual.

Rare Disease Day began in 2008 and is coordinated internationally by Eurordis-Rare Diseases Europe, a patient-driven alliance of 956 patient organizations in 73 countries. The U.S. joined the effort in 2009.

Go here for this year’s official Rare Disease Day video, which is available in 36 languages and tells the story of six rare disease patients from six continents.

The long-term goal of Rare Disease Day has been to increase equity for patients and their families as it concerns diagnosis, treatment, care, and social opportunities. Rare diseases include: porphyria, cystic fibrosispulmonary hypertension, scleroderma, sickle cell, Angelman syndrome, Batten and Gaucher diseases, epidermolysis bullosa, fragile X syndrome, and spinal muscular atrophy, among many others.

“Building awareness of rare diseases is so important because one in 20 people will live with a rare disease at some point in their life,” a Rare Disease Day webpage states. “Despite this, there is no cure for the majority of rare diseases, and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.”

The official Rare Disease Day Information Pack includes topics such as event organizing, how to take action locally, and how to tell stories. There also are logos and fact sheets available.

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

Patients and caregivers are invited to show solidarity by posting their stories, photos and videos on the Rare Disease Day website.

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 downloadable press kit to help with local media, a social media toolkit, and other resources.

Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are many people living with rare diseases and attendant life-changing issues that are largely unknown to the general public.

“The goal of Rare Disease Day is to bring patients and advocates together to elevate the message that millions of people around the world living with rare and undiagnosed diseases need earlier diagnosis, safe and effective treatments, and access to medical care and other critical services,” Peter L. Saltonstall, NORD president and CEO, said in a statement to BioNews Services, which publishes this website.

“Because of the ongoing COVID-19 pandemic, this Rare Disease Day will be a largely virtual celebration. For example, NORD’s Rare Action Network is hosting events online, bringing the rare community and elected officials together to discuss what life is like with a rare disease, and how healthcare decisions made at the state level — on issues like Rare Disease Advisory Councils — have a major impact on over 25 million Americans living with a rare disease.”

NORD is asking supporters to join the Show Your Stripes movement by wearing stripes on Rare Disease Day, taking a photograph and posting it with a message of support on social media, and using the hashtags #ShowYourStripes and #RareDiseaseDay. Discover more ways to Show Your Stripes here.

Supporters also are encouraged to partake in a NORD Rare Action Network virtual event in which key state policies affecting rare patients and families will be discussed. (Register here.)

In addition, the organization is pledging to help the rare community light up as many buildings and landmarks as possible in Rare Disease Day colors on or around Feb. 28. Visit the Light up for Rare campaign to learn more about how to become involved locally.

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.

‘What Makes Me Rare’

BioNews Services also is marking again Rare Disease Day through a social media campaign called “#WhatMakesMeRare.” This time, the team is planning an event for the entire rare disease community in the last week of February that seeks to bring together different patient communities within the rare disease community. The idea is to build bridges of communication and solidarity.

To determine what the event will entail, BioNews is requesting input until Feb. 12 via a 13-question survey about topics such as availability and the type of events preferred.

“Our main goal is to get people to know each other,” said Isaura Santos, director of social media for BioNews. “We’re gathering people from different communities that have to overcome different obstacles, but have a lot in common such as resilience and courage. It’s going to be very enlightening and inspirational to be a part of this conversation,” she said.

Elsewhere, the rare disease series “Behind The Mystery: Rare and Genetic Diseases” will feature a Rare Disease Day presentation premiering Feb. 24 at 7 p.m. EST on The Balancing Act, airing on Lifetime Television. Afterward, the presentation will be live-streamed here. The special will feature Lisa Sarfaty, NORD’s director of strategic planning, who will discuss rare diseases and Rare Disease Day, and three patients with rare diseases who will share their stories.

Throughout the U.S., official Rare Disease Day virtual activities include:

Go here to submit an event in the U.S.

There also is no shortage of events around the globe; to date, 45 countries are offering 128 events. In the United Kingdom, for example, a virtual musical, “RariTea,” will take place Feb. 28. And in Canada, a “From Draft to Action Plan” event will occur March 9–10.

Also, Germany’s Center for Rare Diseases at Ulm University Hospital is presenting an “International Day of Rare Diseases” Feb. 27. In Iceland, a documentary about how the healthcare system is working for rare disease patients will be shown from Feb. 24–28.

A list of global events, by country, is available 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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José holds a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.
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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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