25 – 30 million people in the United States, 30 million people in the European Union, have been diagnosed with a Rare Disease. During this time we ask that you help patients living with chronic illnesses by adhering to public health officials recommendations.
Tag Archives: Patient voice
Patient Advocate Dima Hendricks A Sickle Cell Survivor, Shares Her Story with Racial Bias in Medicine
Black Americans are systematically under-treated for pain relative to white Americans and women are less likely to be believed about their pain symptoms in comparison to their male counterparts.
Digital Health & Rare Diseases | Dawn Irish
<br /> Meet Dawn Irish, Digital Health & Emerging Technology Expert I’m passionate about the opportunity to incorporate genetics into …
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A Voice For Young Adults Living With Chronic Illness | Sneha Dave
<br /> Meet Sneha Dave, Founder of The Health Advocacy Summit. She created a movement for young adults living …
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A Previvor’s Patient Journey & Perspective on Security Vulnerabilities Among Peer Support Groups | Andrea Downing
Frustrated with lack of options beyond removing body parts, Andrea started Brave Bosom in 2012 as a place to write about her own experiences relating to BRCA.
Mental Health & Stigma Conversations with Patient Advocates Gabe Howard & Rie Lopez
May is Mental Health Awareness Month. Did you know that 43.8 million adults experience mental illness in a given year …