Each February, the rare disease community joins together to celebrate Rare Disease Month. Started in 2008 by the European Organization for Rare Diseases (EURORDIS), the event brings together rare disease patients, caregivers, and advocacy organizations across the globe to advance awareness and increase research opportunities.
The Rare Disease Month celebration culminates in Rare Disease Day, held annually on the “rarest day” of the year, February 28th or 29th, depending on leap years.
What is a Rare Disease?
In the United States, a rare disease is categorized as one affecting less than 200,000 individuals. On a global scale, however, the combined number of people diagnosed with a rare disease tops 300M.
Over 7,000 rare diseases have been diagnosed to date, but 90% of these are still without a US Food and Drug Administration (FDA)-approved treatment method.
2023 Rare Disease Day Themes
The 2023 Rare Disease Day themes are Show Your Stripes and Share Your Colors.
#ShowYourStripes:
- Zebras are the official symbol for rare disease patients, as their stripes are unique to each animal. Rare diseases affect fewer people than common diseases, but each path to treatment will be different.
#ShareYourColours
- The color palette for the event is pink, blue, purple, and green, and supporters are asked to dress in those colors each Rare Disease Day.
Clincierge’s Commitment to Rare Disease Day 2023
Clincierge has partnered with The National Institute of Rare Disorders (NORD) to sponsor Rare Disease Day 2023. The monies donated will be used to continue the mission of the organization.
In a recent PharmaPhorum article, Clincierge founder and CEO Scott Gray discussed the benefit of specialized patient concierge services for rare disease clinical trial patients and their caregivers. He also shared why supporting the rare disease community through initiatives like the NORD sponsorship is so crucial:
“The rare disease community and its many disease advocacy groups often work in tandem with patients to reduce the burden of their disorder. However, there are limits to the benefits available to these patients and their families. Research has shown that families caring for someone with a rare disease often have many additional unmet emotional, financial, and medical needs.”
Scott also participated in an episode of the Empowered Patient Podcast, where he talked about removing the burdens of participation for those in rare disease clinical trials. In discussing Clincierhge’s one-on-one patient support model, he says:
“They speak with the patient and the caregiver and families to understand what the unique needs are for each of the families, each of the family units, each of the patients. And they build the logistics to enable the patient to, as easily as possible, make each of the visits to the site according to the trial regimen. And it's because of this trusting relationship and the support that is provided to the patients that patients knowing that this service is available, are more inclined to enroll in the study,”
How to Get Involved
On February 28th, Clincierge employees across the country will join together and wear their colors in support of Rare Disease Day. While we support rare disease patients every day, this act unites us as a team to show our support for the rare disease community as a whole.
There are many ways to get involved in events throughout Rare Disease Month events, as well as Rare Disease Day itself. Whether you join a virtual or in-person information session, run a race to raise money for research and treatment methods, or dress in the four colors mentioned above, your participation will support those facing a lifetime journey with a rare disease.
- For more information, visit the Rare Disease Day website.
- Click here to find a rare disease event near you.
- To view the many other wonderful sponsors for this year’s event, scroll
