Rare Disease Day Events Bring Awareness, Equity to Patients

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by Hawken Miller |

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Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people.

In 2022, the 14th anniversary of the launch of the global movement, the goal is no different. A number of events, both in-person and virtual, will occur throughout the month and leading up to Rare Disease Day on Feb. 28.

“Rare Disease Day has grown into an essential annual celebration to engage the community, elevate the stories of people living with a rare diagnosis and their families, and drive donations to our shared cause,” Peter Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), said in an emailed statement to Bionews.

NORD, which collaborates with 330 member organizations in the U.S., joined Rare Disease Day as its official sponsor in 2009.

“The pandemic and changing scape of the world has not lessened the impact and importance of standing together and lifting up members of our rare family,” Saltonstall said.

The official rare disease website, run by EURORDIS (Rare Diseases Europe) — the organization that first created the special day — encourages participants to “share your colors” to raise awareness for rare diseases on social media.

A downloads section of the website shares social media graphics, poster designs, fact sheets, and infographics. Available toolkits can help guide conversations about, for example, rare diseases among children, explaining the importance of equity for those with these conditions, and how to light up your home or neighborhood building in the pink, blue, green, and purple swatches that symbolize the day.

People are invited to decorate or light up their homes with these colors at 7 p.m. local time on Feb. 28. Use hashtag #LightUpforRare to share on social media. Popular buildings and landmarks, such as Gateshead Millennium Bridge in the U.K., Kurilpa Bridge in Australia, the Ministry of Health in Cyprus, Palazzo Del Podestà in Italy, and UAP Tower in Kenya also will be lit up.

The official Rare Disease Day video adds the voices of five rare disease patients from Lebanon, Zimbabwe, Egypt, Serbia, and Peru to others who were profiled in 2021.

EURORDIS will host a virtual ceremony, the Black Pearl Awards, which will recognize people who are “making a difference for the rare disease community,” from 6 to 7:30 p.m. CET (Central European Time) on Tuesday.

NORD plans to put on a virtual event starting at 1:30 EST Feb. 28, with entertainment from a celebrity guest lineup and an opportunity to connect with other members of the rare disease community.

An in-person or virtual Zebra 5k Run, Walk, Roll or Stroll also will be hosted by NORD. These events will benefit Avery’s Hope, a foundation that provides financial assistance to families who have a child with a rare disease at any of several U.S. hospitals: Children’s Hospital of Philadelphia; Children’s Hospital of Pittsburgh; Texas Children’s Hospital; and St. Jude Children’s Research Hospital. Money raised from this event will provide financial assistance to patients with gastrointestinal issues because of treatment or underlying disease.

Hospitals also are participating in daylong event on 2022. Nationwide Children’s Hospital has set up a webinar on Feb. 22 from 4 to 7:30 p.m. EST, which will discuss the impact of rare diseases on patients and families. The Quinnipiac Frank H. Netter MD School of Medicine will host its annual Rare Disease Day Symposium from 1 to 5 p.m. EST on Feb. 25. The event serves as an accredited continuing medical education activity for physicians. Organizers will require in-person guests to be fully vaccinated.

The U.S. government also is involved, with the National Institutes of Health (NIH) hosting virtual Rare Disease Day at NIH from 10 a.m. to 6 p.m. EST. Online presentation topics will include diversity in rare diseases research and equity of care, personalized medicine, clinical trial enrollment, and telehealth.

The Everylife Foundation for Rare Disorders will host its annual Rare Disease Week on Capitol Hill from Feb. 22 to March 2. This year’s event will be virtual. It will be an opportunity for rare disease advocates to learn about proposed federal legislation and share their experiences with lawmakers. Events throughout the eight-day period include a Rare Disease Congressional Caucus Briefing, a Young Adult Representatives of Rare Disease Legislative Advocates Meetup, and a Rare Artist Gallery.

The congressional caucus will focus on accelerated approvals affecting rare diseases. The results of a study related to the topic will be released by EveryLife during the event, which begins at 1 p.m. EST on Feb. 22.

Global Genes, a California-based organization that seeks to connect, empower, and inspire the rare disease community, encourages people to participate in marking the event by wearing Global Genes face masks or the Blue Denim Genes Ribbon, creating a “Why I Care About Rare” sign, and interacting with the nonprofit on social media.

From 10 to 11:30 a.m. EST on Feb. 28 and March 1, Syneos Health, a biopharmaceutical solutions company, and Rare Disease Innovations Institute will host a series of keynote presentations and discussions with advocates about the topic of mental health.

Bionews, the publisher of this website, is hosting a panel discussion titled “A Window Into Rare” at 2 p.m. CST on Feb. 28. The web event, which is expected to last 90 minutes, will focus on what it means to be rare and will feature Bionews columnists, including Paris Dancy of Cushing’s Disease News, Michelle Gonzaba of Myasthenia Gravis News, Claire Richmond of Porphyria News, and Sherry Toh of SMA News Today.

“I want this theme to be a window into what we don’t often talk about around these awareness days,” said Liza Bernstein, host of the discussion, and patient advocate and senior director of patient and community engagement at Bionews.

Bernstein said she’s attempted to make it as accessible as possible, including sign language and closed captioning.

A number of international events are planned for Rare Disease Day. In Australia, the Champion Health Agency will host a virtual Q&A and discussion with five women affected by ultra-rare diseases. The Mexican Network of Rare Diseases will host its annual Rare Disease Day Symposium virtually, in collaboration with the International Laboratory for Research on the Human Genome (LIIGH) at the National Autonomous University of Mexico.

The umbrella rare disease organization Austrian Pro Rare Austria — Alliance for Rare Diseases, plans to hold a virtual informational event Feb. 26 that discusses early rare disease diagnosis, and patient-friendly ways of getting enzyme replacement therapy, among other topics. The Príncipe Felipe Research Center Foundation (CIPF) in Spain also will host an in-person event profiling the research of its female scientists.