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b"ONCE UPON A GENE - EPISODE 180\\nPatients and Caregivers Being Compensated to Tell Their Stories and Get Connected to Research Opportunities with Rare Patient Voice Founder Wes Michael\\n\\nWes Michael is the Founder of Rare Patient Voice, which connects families and caregivers of rare and non-rare diseases with opportunities to share their stories and their opinions with companies and researchers by participating in all types of studies\\u2014 surveys, phone interviews, bulletin boards, focus groups, clinical trials, and more.\\xa0\\n\\nEPISODE HIGHLIGHTS\\n\\nCan you tell our friends listening a little about what you do?\\xa0\\nI started a company called Rare Patient Voice almost 10 years ago now. What we do is\\xa0 invite patients and caregivers to take part in studies, phone or Zoom interviews, online surveys, or online focus groups for our clients, who typically are working on behalf of the pharma companies, device companies or academics. They want to know what patients are thinking and patients are compensated for their participation, currently at a rate of $100 / hour. We go out to patient events, walks, conferences and fundraisers and invite them to join. When we get a request that matches their condition or disease\\xa0 category, we'll send them an email and we serve as the matchmaker.\\xa0\\n\\nWhat inspired you to start Rare Patient Voice?\\xa0\\nMy background was not in healthcare. I was involved in market research for Wheaties and Cheerios. But then I moved into the healthcare field 30 or so years ago, and I was very excited because companies there were just learning to talk to patients. They started advertising drugs directly to the patients on TV. We were contacted by a company that was in the rare disease space\\u2014 they worked in hemophilia. They explained there were very few patients, but they were very important to them and they wanted to learn from them through surveys and interviews. We were asked to build a panel, so we went to the National Hemophilia Foundation, had a booth and table, we talked to people and asked if they were interested in sharing their opinions. A couple years later, we were approached by a different company that also worked in hemophilia and they also wanted to access the patient panel. It got me thinking about creating a group of people that could be invited to studies for numerous companies and include different conditions and diseases. Now we represent 750+ diseases.\\xa0\\n\\nDo you help guide patients and caregivers from the beginning to help them tell their story?\\xa0\\nOur clients are the moderators and they'll prep people and make sure they're comfortable. To prepare for an interview, you just bring your opinions. You don't have to do any special studying or research. The key is to be honest because you don't have to impress anybody. They just want to know the truth.\\xa0\\n\\nHow can listeners sign up?\\nPeople can sign up on the website by providing specific information which is kept confidential. They'll get a double opt-in email and it's as simple as that.\\n\\n\\nLINKS & RESOURCES MENTIONED\\nRare Patient Voice Website\\nhttps://rarepatientvoice.com/\\n\\nTUNE INTO THE ONCE UPON A GENE PODCAST\\nSpotify\\nhttps://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7\\nApple Podcasts\\nhttps://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347\\nStitcher\\nhttps://www.stitcher.com/podcast/once-upon-a-gene\\nOvercast\\nhttps://overcast.fm/itunes1485249347/once-upon-a-gene\\n\\nCONNECT WITH EFFIE PARKS\\nWebsite\\nhttps://effieparks.com/\\nTwitter\\nhttps://twitter.com/OnceUponAGene\\nInstagram\\nhttps://www.instagram.com/onceuponagene.podcast/?hl=en\\nBuilt Ford Tough Facebook Group\\nhttps://www.facebook.com/groups/1877643259173346/\\n\\nInterested in advertising on Once Upon a Gene? Email advertising@bloodstreammedia.com for more information!"