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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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    • The Impact of Rare Diseases on Patients and Caregivers
    • The Role of Patient Advocacy Groups
    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping patients and caregivers share their voices

RPV’s Pam Cusick Named a Woman of Distinction by MM+M

March 22, 2022 Laura Mullen

Yesterday afternoon, something we’ve known all along at Rare Patient Voice was confirmed in a major way. Our Senior Vice President, Pam Cusick, was named one of MM+M’s Women of … READ MORE

Filed Under: Business Tagged With: MM+M, Pam Cusick

Rare Patient Voice Chosen for Inclusion in the Valuable Directory

March 8, 2022 Laura Mullen

The Valuable 500 Launch World’s First Global Directory of Disability Inclusion Specialists TOWSON, MD, March 8, 2022 – Today, on International Women’s Day, the Valuable 500, the largest network of … READ MORE

Filed Under: Business Tagged With: disability, Pam Cusick, Valuable 500, Valuable Directory

RPV’s Pam Cusick on Supporting Ourselves and Others

November 15, 2021 Laura Mullen

Taking time to think about who we are and where we are going can easily fall by the wayside in our busy lives. But practicing some introspection, goal-setting, and self-care … READ MORE

Filed Under: Business Tagged With: Enneagram, market research, Pam Cusick, WIRexec Leadership Summit, Women in Research

The Power of the Patient Voice: Talking DTC Webinar Recording Available Now

September 29, 2021 Laura Mullen

People living with a disease or caring for a loved one who does really do become front line experts. There is significant value in patients and caregivers sharing their experiences … READ MORE

Filed Under: Business Tagged With: Bob Ehrlich, DTC, inVibe Labs, Julie Hinton, Kathryn Ticknor, Pam Cusick, Rare Patient Voice

Germany’s +3 Magazine Interviews Pam Cusick on the Patient Voice

September 3, 2021 Laura Mullen

Rare disease affects over 300 million people around the world, making it a truly global health priority. Rare Patient Voice connects patients and caregivers in Germany, Spain, Italy, France, and … READ MORE

Filed Under: Business, Community, Patient Tagged With: +3 Magazine, Pam Cusick, rare disease, Rare Patient Voice

Latest Blog Posts

  • Weekly Warrior: Meet Kelsey
  • Need to raise funds for your org’s efforts? Join our referral program and let RPV help amplify your voice! 
  • Weekly Warrior: Meet Allie
  • Weekly Warrior: Meet Denise
  • A Thank You to Our Patients, Caregivers, and Patient Advocacy Group Partners

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