Rare Disease Day events create awareness and justice for patients
Since 2008, Rare Disease Day – the last day of February – has brought together patients, caregivers, family, friends and advocates from around the world to raise awareness and improve justice for the more than 7,000 known rare diseases, from which affects more than 300 million people.
In 2022, the 14th anniversary of the start 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 it Rare Disease Day on February 28th.
“Rare Disease Day has become an important annual celebration to engage the community, elevate the stories of people living with a rare diagnosis and their families, and encourage donations to our common cause,” said Peter Saltonstall, President and CEO of National Organization for Rare Diseases (NORD), said in an email statement to BioNews.
NORD, which works with 330 affiliates in the US, joined Rare Disease Day 2009 as an official sponsor.
“The pandemic and the changing landscape of the world have not diminished the importance and importance of standing together and uplifting members of our rare family,” Saltonstall said.
The official website on rare diseases, operated by EURORDIS (Rare Diseases Europe) – the organization that first created this special day – encourages attendees to “share your colors” to raise awareness of rare diseases on social media.
ONE Downloads Section of the site shares social media graphics, poster designs, datasheets, and infographics. Available toolkits can help spark conversations about, for example, rare diseases in children, explain the importance of justice for people living with these conditions, and explain how to decorate your home or neighborhood building with the symbolic pink, blue, green, and purple Patterns can light up the day.
People are invited to decorate or light up their homes with these colors on February 28 at 7 p.m. local time. Use the hashtag #LightUpforRare to share them 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 are also illuminated.
Official Rare Disease Day Video adds the voices of five rare disease patients from Lebanon, Zimbabwe, Egypt, Serbia and Peru to others profiled in 2021.
EURORDIS will host a virtual ceremony that Black Pearl Awardswhich recognizes people who “make a difference in the rare disease community” on Tuesday from 18:00 to 19:30 CET (Central European Time).
NORD is planning one virtual event beginning at 1:30 am EST on February 28, with entertainment from celebrity guests and an opportunity to connect with other members of the rare disease community.
A personal or virtual Zebra 5k Run, Walk, Roll or Amble is also organized by NORD. These events will benefit Avery’s hope, a foundation that provides financial support 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 at this event will help financially patients with gastrointestinal problems due to a treatment or underlying condition.
Hospitals are also participating in an all-day event in 2022. Nationwide Children’s Hospital set one up webinar on February 22 from 4:00 p.m. to 7:30 p.m. EST discussing the impact of rare diseases on patients and families. The Quinnipiac Frank H. Netter MD School of Medicine hosts its annual Rare Disease Day Symposium from 1:00 p.m. to 5:00 p.m. EST on February 25. The event serves as an accredited continuing medical education activity for physicians. Organizers require personal guests to be fully vaccinated.
The US government is also involved, with the National Institutes of Health (NIH) being virtual hosts Rare Disease Day at the NIH from 10 a.m. to 6 p.m. EST. Topics for the online presentation include diversity in rare disease research and equity of care, personalized medicine, clinical trial registration and telemedicine.
The Everylife Foundation for Rare Disorders hosts their annual Rare Disease Week on Capitol Hill from February 22nd to March 2nd. 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 during the eight-day period will include a Congressional Caucus Briefing on Rare Diseases, a Meeting of Young Adult Representatives of Rare Disease Legislators, and a Rare Artists Gallery.
The Congressional Committee will focus on accelerated approvals for rare diseases. The results of a study on the subject will be released by EveryLife during the event, which begins February 22 at 1:00 p.m. EST.
Global Genes, a California-based organization seeking to connect, empower and inspire the rare disease community, encouraged People participating in the celebration of the event by wearing Global Genes face masks or Blue Denim Genes ribbon, creating a “Why I Care About Rare” sign and interacting with the nonprofit on social media.
From 10am to 11:30am EST on February 28th and March 1st, Syneos Health, a biopharmaceutical solutions company, and the Rare Disease Innovations Institute will host a series of Keynote presentations and discussions with advocates around the topic of mental health.
BioNews, the publisher of this website, is hosting a panel discussion entitled “A window into the rare” on Feb. 28 at 2 p.m. CST. The web event, expected to last 90 minutes, will focus on what it means to be rare and will feature columnists from BioNews including Paris Dancy Cushing’s Disease NewsMichelle Gonzaba from Myasthenia gravis newsClaire Richmond from News about porphyriaand Sherry Toh from SMA news today.
“I want this topic to be a window into what we don’t talk about often on these awareness days,” said Liza Bernstein, discussion host and patient advocate and Senior Director of Patient and Community Engagement at BioNews.
Bernstein said she tried to make it as accessible as possible, including sign language and subtitles.
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 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 organization for rare diseases Austrian Pro Rare Austria – Alliance for Rare Diseases is planning a virtual information event event 26 February, which will discuss, among other things, the early detection of rare diseases and patient-friendly ways to carry out enzyme replacement therapy. The Príncipe Felipe Research Center Foundation (CIPF) in Spain will also host an in-person event event Profiling the research of their female scientists.