Towson, MD, 2.29.2024 – For over a decade, Rare Patient Voice (RPV) has empowered patients and family caregivers to have their voices heard through participating in research studies. On this Rare Disease Day today, RPV joins together with the rare community in raising awareness of the issues faced by over 300 million people living with rare diseases worldwide.
Since its inception in 2013, Rare Patient Voice has been committed to bringing the opinions and experiences of rare patients and family caregivers to the forefront. Once they have joined RPV, members are connected with opportunities to participate in all types of research studies, for which they are compensated.
“What started as a good idea over a decade ago has since blossomed into reality, with patients and family caregivers engaged and happy to have their insights heard by decision makers, and clients successfully connecting with the quality participants needed for impactful research,” said Wes Michael, Founder and President of Rare Patient Voice. “We remain dedicated to the rare disease community and to helping empower patients and their caregiving loved ones be heard by companies developing new treatments and services to improve lives.”
Today and every day, Rare Patient Voice promotes awareness and connections throughout the rare community. Check out this video for a special message from Wes Michael and to hear the story of Jessica Bolden, an RPV staff member who lives with Sickle Cell disease.
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