For many people, February 29th is simply Leap Day, an extraordinary date that appears only once every four years. For others, this rare day is aptly the day we honor rare disease communities. Observed annually on the last day of February since 2008, Rare Disease Day has grown into a global movement for raising awareness, promoting research, and advocating for improved access to rare disease treatments and support services.
At Worldwide, we are dedicated to amplifying the voices of those directly impacted by rare diseases — patients, caregivers, family members, advocates, and healthcare professionals alike. While each rare disease affects a small percentage of the population, collectively, there are many people living with rare diseases. Their impact is far-reaching, touching the lives of hundreds of millions of individuals and families across the globe.
Each year, we very intentionally recognize Rare Disease Day to honor the rare disease community. This year, we wanted to do something different—something that elevated and extended the reach of the voices in the communities we work with and support every day.
Why We Created “Rare Moments”
This year, our Therapeutic Strategy Leads created Rare Moments, a space for all stakeholders in the rare disease ecosystem to share meaningful moments, connect with one another, and share resources. While industry partners in rare research may be engaged on LinkedIn or company websites, advocacy partners are more likely to use Facebook or other social media platforms for communication. We created the Rare Moments platform to have one place for all people invested in rare disease research, regardless of role, to engage and hear from others working towards common goals.
Each day throughout the month of February, we heard what was on the minds and hearts of patients and patient advocacy organizations, clinical developers driving treatments, and family members supporting people with rare diseases. We were overwhelmed by how excited the community was to participate!
Rare Moments from the Communities
The moments we received covered a spectrum of topics, from emotional personal narratives to upcoming events in the rare disease space. Overall, 35 people from across 19 unique patient organizations, sponsors, and industry organizations joined in to share their rare moments. Together, the community highlighted:
- 15 posts talking about Rare Disease Day or featuring events happening or coming up in the rare disease communities
- 7 news announcements
- 12 posts related to drug development
- 22 posts related to advocacy or personal experiences
- 6 posts about policies impacting rare communities
- 12 posts featuring valuable resources for the community
Here are just a few of the many heartfelt and touching moments we received on our page:
We were deeply moved by the outpouring of interest and the experiences shared. From inspiring anecdotes to personal triumphs, the contributions have helped shed light on what it’s like to be in rare disease communities. We would like to extend a heartfelt thank you to each and every one of you who contributed to and shared your stories.
While the Rare Moments page is now closed to submissions, all posts are still accessible, and we encourage you to check them out!
What’s Next?
Rare Disease Day serves as a reminder of the strength, resilience, and unity within the rare disease community. To get more involved in the community, we invite you to check out the posts shared and reach out to any of the contributors who left an impact on you.
As we continue to work tirelessly to advance rare disease treatments, improve clinical trial quality, and increase access to life-saving therapies, we hope to have the chance to meet you, work with you, or elevate your voice. Check out how we build mutually beneficial relationships with patient communities, incorporate the patient experience into trial design, and how we ensure the patient voice is accounted for in our trials.
We will be at WODC April 24th-25th and hope to see you there!
- Our Juliane K. Mills, MS, MPH, Senior Director, Therapeutic Strategy Lead, Rare Disease, will be presenting “Uniting for the Uncommon: Successes and Lessons in Pharma-Patient Advocacy Partnerships” on April 24th at 12:05 PM.
- Our Derek Ansel, Executive Director, Therapeutic Strategy Lead, Rare Disease, will be leading the roundtable “Shifting Strands: Operational Challenges and Ethical Dilemmas of Genetic Testing” on April 24th at 2:25 PM.
