“Hello world! Julie here, aka @msxstrong. l was diagnosed with Multiple sclerosis back in 2019, after years of grappling with different symptoms. One of the many things I’ve learned from … READ MORE
Meet Our Team: Mirza Mujdzic-Jojic, Business Development Associate – EU
Mirza Mujdzic-Jojic joined RPV in December 2023 as a Business Development Associate – EU, helping to drive RPV’s growth strategy by identifying new business opportunities in the European market and … READ MORE
RPV’s Rare Caregiver Survey Featured in Rare Revolution Magazine
Earlier this year, Rare Patient Voice survey 735 caregivers of loved ones living with a rare disease on how their caring role has affected their lives. The survey results then … READ MORE
Wes Michael Discusses the Patient Voice on Raising Rare Podcast
Presented by Salem Oaks and CureGPX4, the “Raising Rare” podcast follows a parent’s journey to find a treatment for their child’s ultra rare genetic disorder. The podcast also features stories of other rare disease families, … READ MORE
RPV’s Pam Cusick to Share Patient Views on Clinical Trial Awareness
In a webinar in conjunction with Patients as Partners in Clinical Research, Rare Patient Voice will be sharing new results from a survey conducted with the RPV patient community. Pam … READ MORE
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