Towson, MD, 2.28.2025 – For over a decade, Rare Patient Voice (RPV) has empowered patients and family caregivers to have their voices heard through participating in all types of healthcare research. Rare Disease Day is observed annually on the last day of February, and today RPV joins together with the rare community in raising awareness of the issues facing over 300 million people living with rare diseases worldwide.
This year’s slogan for Rare Disease Day is “More than you can imagine.” The theme is based on the idea that rare diseases and the people living with them, as well as their families, can be underrepresented or misunderstood by the public.
At RPV we have and continue to contribute significantly to the patient-centricity movement. This means companies working on treatments, devices, and services for patients start with what the patient needs. By sharing opportunities with patients and family caregivers to provide their feedback to researchers and companies, we make it possible for decision-makers to take into account the patient perspective.
Wes Michael, President and Founder of RPV, measures our success by the positive comments from patients and family caregivers as well as clients. “It’s so gratifying to know that you have helped a patient share their story with someone who can make a difference in their lives,” he says. “In addition to the number of people (and diseases), we need to raise awareness of the burden that patients and caregivers take on – it’s truly more than you can imagine.”
Today – and every day – Rare Patient Voice remains committed to elevating the voices of rare patients and family caregivers to the companies and researchers working on new treatments and products to improve lives.
About Rare Patient Voice
Rare Patient Voice, LLC provides patients and family caregivers an opportunity to participate in all types of research including market research, health economics outcomes and real-world evidence, user experience/human factors studies, and clinical trials. The RPV community includes over 180,000 patients and caregivers across more than 1,500 diseases, both rare and non-rare, in nine countries. Visit us at www.rarepatientvoice.com.
Contact: Laura Mullen laura.mullen@rarepatientvoice.com
