Since 2008, Rare Disease Day – the last day of February – has brought together patients, caregivers, family members, friends and advocates around the world to raise awareness and improve equity for more than 7,000 diseases known rare that affect more than 300 people. millions of 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 take place throughout the month and leading up to Rare Disease Day on February 28.
“Rare Disease Day has become an essential annual celebration to engage the community, elevate the stories of people living with a rare diagnosis and their families, and generate donations to our common cause,” Peter Saltonstall, President and CEO leadership of the National Organization for Rare Disorders (NORD), said in an emailed statement to BioNews.
NORD, which works with 330 member organizations in the United States, joined Rare Disease Day as an official sponsor in 2009.
“The pandemic and changing landscape of the world has not diminished the impact and importance of standing together and uplifting our rare family members,” Saltonstall said.
The official Rare Diseases website, run by EURORDIS (Rare Diseases Europe) – the organization that created the first special day – encourages participants to “share your colours” to raise awareness of rare diseases on social media.
A download section of the website shares social media graphics, poster designs, fact sheets and infographics. The toolkits available can help guide conversations about, for example, rare diseases in children, explaining the importance of equity for people with these conditions and how to light up your home or neighborhood building in the pink, blue, green and purple shades that symbolize the day.
People are invited to decorate or light up their homes with these colors at 7 p.m. local time on February 28. Use the #LightUpforRare hashtag to share on social media. Popular buildings and landmarks, such as the Gateshead Millennium Bridge in the UK, the Kurilpa Bridge in Australia, the Ministry of Health in Cyprus, the Palazzo Del Podestà in Italy and the UAP Tower in Kenya will also be illuminated.
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 hold a virtual ceremony, the Black Pearl Awards, which will recognize people who “make a difference to the rare disease community”, from 6 to 7.30 p.m. CET (Central European Time) on Tuesday.
NORD plans to host a virtual event beginning at 1:30 a.m. EST on February 28, featuring entertainment from a celebrity guest list 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 will also 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 one of several US 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 due to treatment or underlying disease.
Hospitals are also participating in a one-day event in 2022. Nationwide Children’s Hospital hosted a webinar on Feb. 22 from 4-7:30 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 Symposium from 1 to 5 p.m. EST on February 25. The event serves as an accredited continuing medical education activity for physicians. The organizers will require that in-person guests be fully vaccinated.
The US government is also involved, with the National Institutes of Health (NIH) hosting Virtual Rare Disease Day at the NIH from 10 a.m. to 6 p.m. EST. Online presentation topics will include diversity in rare disease research and equity of care, personalized medicine, clinical trial enrollment and telehealth.
The Everylife Foundation for Rare Diseases will host its annual Rare Disease Week on Capitol Hill from February 22 through March 2. This year’s event will be virtual. This 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 meeting of young adult representatives of rare disease legislative advocates, and a gallery of rare artists.
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 at the event, which begins at 1 p.m. EST on February 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” and interact with the association on social networks.
From 10 a.m. to 11:30 a.m. EST on February 28 and March 1, Syneos Health, a biopharmaceutical solutions company, and Rare Disease Innovations Institute will host a series of presentations and discussions with advocates on the topic of mental health.
BioNews, the publisher of this website, is hosting a panel discussion titled “A Window Into Rare” at 2:00 p.m. CST on February 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 newsMichelle Gonzaba from Myasthenia Gravis NewsClaire Richmond from Porphyria Newsand Sherry Toh of SMA news today.
“I want this theme to be a window into what we don’t often talk about on these awareness days,” said Liza Bernstein, discussion moderator, patient advocate and senior director of patient engagement and community at BioNews.
Bernstein said she tried 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 Rare Disease Network will hold its annual Rare Disease Day Symposium virtually, in collaboration with the International Laboratory for Human Genome Research (LIGH) of the National Autonomous University of Mexico.
Austrian rare disease umbrella organization Pro Rare Austria – Alliance for Rare Diseases, plans to hold a virtual information event on February 26 that will discuss early diagnosis of rare diseases and patient-friendly ways to obtain rare disease therapy. enzyme replacement, among other topics. The Príncipe Felipe Research Center Foundation (CIPF) in Spain will also host an in-person event showcasing the research of its female scientists.