The purpose of Rare Disease Day® is to harness the creativity and energy of the millions of people around the world with rare diseases – and the millions who care about and assist them – to raise awareness and generate action. You can help us achieve this goal throughout the year by doing any or several of the following things.
The global theme for Rare Disease Day 2019, organized by our sister organization and founder of Rare Disease Day, EURORDIS, is “Bridging health and social care.” The theme draws focus on bridging the gap in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day. Learn more.
There are 25-30 million Americans impacted by rare diseases. Imagine if each one of those individuals did something in their communities for Rare Disease Day? Learn more below about individuals who have rallied their local communities to do something in honor of Rare Disease Day.
Heroic Inner Kids is a cosplay nonprofit in the Dallas/Fort Worth which held a dinner and cocktail hour within the cosplay community to raise awareness for Rare Disease Day. The organization was founded by a woman with Sturge Weber Syndrome who believes that costumes and comics can be a wonderful way to inspire people with challenges to overcome their difficulties. In 2015, she hosted the largest photo shoot of cosplayers in the area to advocate and raise awareness. In 2016, she took the next step and celebrated the rare disease community and raised awareness to show why research matters.
Sponsored by The Concord Campus, Accessibility Services and Associated Students Inc., and CSUEB sophomore Isabel Bueso, the Cal State East Bay community celebrated Rare Disease Day at both the Concord and Hayward campuses with an awareness walk, volunteer lunch, and free t-shirts. The event increased awareness for rare diseases on campus and raised funds for the CSUEB Rare Disease student scholarship. Read more about Isabel and the event here.
Events and activities within schools and universities are a great way to teach important lessons about the understanding and acceptance of rare diseases. For examples of how students have organized such events and activities, learn more below.
Organized by medical students at the Frank H. Netter School of Medicine at Quinnipiac University, Rare Disease Day at QU is an annual event with the goal being to develop inter-professional programming that integrates health care professionals, patients, and families to advocate and educate the medical community about the health-related, psychosocial and economic impact of rare diseases. In 2018, the event took place at the North Haven campus of Quinnipiac University, where the medical school is located and about 100 people were in attendance.
Throughout the school year, St. John’s Prep hosts numerous dress down days to raise money to support important causes. During the month of February, Peter Danis, a St. John’s Prep student, hosted a dress down day to raise money for NORD on Rare Disease Day. Each student paid $5 or more to dress down for the day and students received information packets on rare diseases, Rare Disease Day and NORD. The money raised helped support NORD’s mission of fighting for the rare disease community and the flyers that students received helped to raise awareness.
Professional organizations large and small come together each year to recognize Rare Disease Day. Whether it is by wearing t-shirts with the Rare Disease Day logo, hosting a lunch and learn, or organizing an event, when these groups of professionals come together for Rare Disease Day, they help to raise the voices of the 25-30 million Americans impacted by rare diseases. For inspiration on how your organization or academic medical center can participate in Rare Disease Day, read about these past events below.
Texas Children’s Hospital organized an event in advance of Rare Disease Day where hundreds of patients, family members, community advocates, health care providers and more gathered at The Health Museum in Houston, TX. For all of the patients who attended, it was highly unlikely that any of them shared the same diagnosis. In many of these cases, conditions are so rare that patients don’t live in the same city or state as someone else with their shared diagnosis. However, just because their diagnoses and symptoms differed, didn’t mean the patients and families couldn’t connect through what it means to have a rare disease. During their event, TCH gave the stage to 35 rare disease organizations and provided information to many families in need. There was an “ask the expert” consultation with genetic specialists, a lecture on navigating the social security system and several discussions from patient advocacy groups. Many attendees and their families were still searching for their diagnosis, so representatives from testing laboratories and the Undiagnosed Disease Network were on hand to provide a variety of resources. More.
NORD’s 280+ patient organization members participate in Rare Disease Day by rallying their individual communities to get involved. For example, one of the original NORD Member Organizations, the GBS-CIDP Foundation, hosts a campaign for their community each year. In 2018, they hosted their “Teach One. Be One. Be a Champion for Rare Disease” campaign. Throughout the campaign, they encouraged their members to get involved with RDD by posting photos, committing to teach one person about GBS-CIDP, and more. For inspiration from our Member Organizations, search their websites using this list of Member Organizations on our website here.
Large corporations get involved in Rare Disease Day each year to make a large impact nationally and among their local communities. In addition, these corporations are encouraged to get involved in Rare Disease Day by sponsoring the campaign in the United States. Learn more below.
If your company or organization is interested in being a sponsor for Rare Disease Day in the United States, please reach out to NORD’s Vice President of Development, Alexa Moore, at [email protected].
Cambridge BioMarketing, a communications agency, launched a #SupportTheSearch social media campaign to raise awareness for rare diseases and the need for research to find cures. As part of the campaign, the agency wrapped the inside and outside of a train car on the Massachusetts Bay Transportation Authority (MBTA) Red Line with facts about rare diseases and zebra stripe branding. Train-riders were encouraged to share messages on social media using #SupportTheSearch and for every post shared leading up to Rare Disease Day, the agency made a donation to NORD and two other rare disease organizations. More.
Every year, MassBio celebrates Rare Disease Day by bringing together nearly 300 industry stakeholders to elevate public understanding of rare diseases and call attention to the special challenges people with these ailments face. The event convenes patient organizations, government agencies, medical researchers, life sciences companies and patients to share stories and recognize the great work being done in Massachusetts and beyond to provide new treatments and cures for diseases that affect nearly 30 million Americans.
