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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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    • The Long and Winding Road to Care
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    • Market Access: A Patient Perspective
    • 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

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July 13, 2019Business, Get To Know, Patient, English

Get to Know: ALS

Amyotrophic Lateral Sclerosis, or ALS, has been gaining a lot of recognition over the past few years. It used to be known as Lou Gehrig’s Disease. But now most people ... READ MORE

Read More
By Wes Michael0
June 23, 2019Business, Community, Get To Know, Patient, English

Get to Know Macular Degeneration

I was able to attend a Macular Degeneration event yesterday in Charlottesville, VA. It was one of several put on by the Macular Degeneration Association across the country, a non-profit ... READ MORE

Read More
By Wes Michael0
June 8, 2019Get To Know, Sickle Cell Disease, English

SICKLE CELL DISEASE

Hi, I’m Wes Michael, president of Rare Patient Voice. This is the first of our series about various diseases and health conditions that we’re calling Get To Know. We’ll provide ... READ MORE

Read More
By Wes Michael0
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