Each year, February marks the observance of Rare Disease Month, culminating in Rare Disease Day on the final day of the month. However, this year, Rare Disease Day holds an extra layer of significance, falling on February 29th, the rarest day of the year due to 2024 being a leap year!
To date, there are over 7,000 rare diseases, each of which affect fewer than 250,000 people, or only 1 in approximately 31,500. Rare Disease Day serves as a global platform to raise awareness for the millions living with rare diseases worldwide. It is a day not only to shed light on the challenges faced by those affected but also to celebrate their resilience alongside their families.
Navigating the world of rare diseases presents countless hurdles – limited research, inadequate awareness, and insufficient funding all contribute to the struggles faced by patients seeking care, understanding and support. For many, even obtaining an accurate diagnosis can be a challenge. At RareMed, our mission is clear: to expedite access to life-changing therapies for those with rare and complex conditions. It is our goal and commitment to these patients to help alleviate these burdens. Rare Disease Day is more than an annual event for us, it is a way to honor the millions of lives we serve and a reminder of those still awaiting breakthrough treatments.
Since the last Rare Disease Day, RareMed has made significant strides in fulfilling our mission. We’ve relocated to a cutting-edge facility tailored to accommodate our expanding team and enhance our patient support services. Moreover, we have broadened our scope to encompass not just rare disease but also complex conditions, bolstering our capacity to effect positive change for much needed patient populations. We have also expanded geographically, with new teams across the country we are better position to deliver medication and support to those in need, driving us closer to our ultimate goal of transforming the lives of patients within the rare disease community.
At RareMed, we celebrated Rare Disease Day with a spirit week and company-wide town hall meeting. If you are interested in getting involved, visit www.rarediseaseday.org to find an event near you.
About Rare Disease Day
Rare Disease Day is a globally-coordinated movement working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since its founding in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is widespread but united in its purpose.
Rare Disease Day is a patient-led movement, but everyone can participate. The Rare Disease Day website (www.rarediseaseday.org) helps patient organizations, patient advocates, and others interested in campaigning for equity for rare disease to identify resources and promote campaign events.
About RareMed Solutions
RareMed Solutions is the nation’s only concierge patient services provider. RareMed partners with biopharma to transform the lives of patients afflicted with rare and devastating conditions by accelerating access to biomedical breakthroughs. Headquartered in Pittsburgh, Pennsylvania, RareMed offers case management, co-pay, coupon and financial assistance programs, reimbursement support, nursing support, healthcare professional education, patient adherence and education, and non-commercial pharmacy dispensing services to all 50 states. RareMed also develops and supports innovative technology solutions to advance the industry, including the award-winning RarePath™ suite of pharmacy hub technologies. The company has a breadth of experience developing, transitioning, and maintaining therapy-specific solutions that ensure unparalleled manufacturer and patient satisfaction. RareMed’s undivided concierge-level focus, high caliber associates, fully dedicated teams, and sophisticated proprietary technology enable it to address the unique needs of patients suffering from rare and devastating conditions. RareMed provides award-winning concierge patient service that recently ranked #1 on Managed Market Insights & Technology’s (MMIT) quarterly patient satisfaction survey. RareMed also provides award-winning employee satisfaction, evidenced by multiple annual appearances on top workplace surveys administered by the Pittsburgh Post-Gazette and the Pittsburgh Business Times.