NORD shares favorite moments from Rare Disease Day
Zebra-themed campaign, video series on mental health among highlights
More than 100 events across the U.S. marked Rare Disease Day, an annual initiative at the end of February to raise awareness for rare diseases like aromatic l-amino acid decarboxylase (AADC) deficiency, which collectively affect around 300 million people worldwide.
“Together, we are living proof that rare is not rare, it is everywhere,” the National Organization for Rare Disorders (NORD) said in a news story posted on its website. “That proof was on display all around the U.S.”
Among the activities NORD highlighted was its collaboration with Bionews, the parent company of AADC News, to bring to the community a five-part video series focused on exploring the mental health challenges faced by those living with rare diseases.
Conducted in partnership with Al Freedman, PhD, a psychologist specializing in therapy for people with rare diseases, the “Keepin’ It Rare: Let’s Talk Therapy with Dr. Al Freedman” series includes conversations with patients, caregivers, and community advocates. All episodes can be found on the Bionews website, with highlight clips available on NORD’s Instagram page.
NORD called for individuals to #ShowYourStripes by posting photos or videos wearing striped clothing, a nod to the zebra, whose unique stripes are a symbol of the rare disease community.
Faces of Rare
Among those showing their stripes were 6-year-old Cesily Collete Taylor, an actor in the film “Wicked” who lives with spina bifida, and American Ninja Warrior finalist and Behçet’s syndrome advocate Pamela Price. Other supporters shared their stories on NORD’s Faces of Rare dedication wall. Those stories have been turned into a video to help spread awareness.
Also returning this year was #LightUpForRare, a campaign in which buildings and monuments were lit in the Rare Disease Day colors of blue, pink, purple and green.
Supporters sent 7,000 emails to their members of Congress urging them to support initiatives that will better the lives of rare disease patients, NORD said.
Members of NORD’s national network of volunteer advocates, the Rare Action Network, met with government officials in several states to ask for their participation in Rare Disease Day and to further support NORD’s efforts to establish a rare disease advisory council in each state to give the rare disease community a voice in local government. And 350 new people joined the Rare Action Network, which is still open to new members, on Rare Disease Day.
NORD’s Living Rare Study also enrolled more than 300 new people. The survey-based study, which is still seeking participants, is designed to be the largest research study in the U.S. aimed at gathering information about the lived experiences of people with rare diseases and their caregivers.
Beyond raising awareness, a goal of Rare Disease Day is to raise funds that will support community members. Paramount Pictures had committed to matching up to $40,000 raised in Rare Disease Day donations. This goal was exceeded, with more than $91,000 raised. NORD said such donations, many of which came this year from new donors, help provide financial assistance to help rare disease patients afford the care they need.
NORD also acknowledged progress made by its Centers of Excellence, leading hospitals and medical centers involved in rare disease care and research, and its Rare Disease Day industry sponsors, who supported the initiatives in various ways.
Takeda Pharmaceuticals, NORD noted, released 100 toy zebras onto the court during a Boston Celtics basketball game, and took over the Jumbotron to educate the crowd about the prevalence of rare diseases.
NORD’s Rare Disease Day content is available on its RDD25 Instagram story, and can be found across social media under the hashtags #RareDiseaseDay and #ShowYourStripes.
“Rare Disease Day is our favorite day of the year because we get to see so many of you proudly Show Your Stripes together, reminding us just how special this community is,” NORD said. “This year was no exception.”
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