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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

The Gold Standard: Quality Takes Time

February 6, 2024 Laura Mullen

Rare Patient Voice President and Founder Wes Michael discusses why it’s not always easy to become a member of RPV. The simple answer is: quality takes time. We have to … READ MORE

Filed Under: Business, Patient

Weekly Warrior: Meet Kiera

February 2, 2024 Laura Mullen

Kiera is our latest Weekly Warrior. An advocate and researcher, she lives with Addisons disease and Ehlers-Danlos syndrome. She shares her story here. https://www.linkedin.com/feed/update/urn:li:activity:7159210935558053888

Filed Under: Patient

Michael & Mom’s RPV Rap

February 1, 2024 Laura Mullen

On January 5, Michael and Ashlee Cramer joined RPV for an inspiring talk during our virtual company retreat. A bit of background: Michael Cramer is a 22-year-old cancer survivor, bone … READ MORE

Filed Under: Patient

Weekly Warrior: Meet Anita

January 19, 2024 Laura Mullen

Anita is our latest Weekly Warrior. In 2020 she was diagnosed with Multiple Sclerosis, and her life has changed dramatically since then. Anita shares her story here. https://www.linkedin.com/feed/update/urn:li:activity:7154126202507595776

Filed Under: Patient

Weekly Warriors: Meet Karen and Dominic

January 12, 2024 Laura Mullen

Our latest Weekly Warriors are caregiver Karen and her six year-old son Dominic, who lives with Congenital Disorders of Glycosylation and is nonverbal. Karen shares their story here. https://www.linkedin.com/feed/update/urn:li:activity:7151589544901931008

Filed Under: Patient

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