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Rare Patient Voice - A Konovo Company

Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

Happy Halloween from RPV!

October 31, 2024 Laura Mullen

A happy and safe Halloween from all of us at Rare Patient Voice!

Filed Under: Business, Patient

Wes Michael Interviewed on Huntington’s Disease Podcast

October 30, 2024 Laura Mullen

Huntington’s disease (HD) is a genetic disorder that causes the gradual breakdown and death of nerve cells in the brain. Help 4 HD is the first podcast created to solely … READ MORE

Filed Under: Business, Interviews

Meet Our Team: Mirza Mujdzic-Jojic, Business Development Associate – EU

October 17, 2024 Laura Mullen

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

Filed Under: Business

RPV’s Rare Caregiver Survey Featured in Rare Revolution Magazine

October 14, 2024 Laura Mullen

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

Filed Under: Business, Media Mentions

Wes Michael Discusses the Patient Voice on Raising Rare Podcast

October 1, 2024 Laura Mullen

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

Filed Under: Business, Interviews

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