Rare Patient Voice https://rarepatientvoice.com/ Helping Patients with Rare Diseases Voice Their Opinions Fri, 15 Mar 2024 16:39:39 +0000 en-US hourly 1 https://wordpress.org/?v=6.4.3 https://rarepatientvoice.com/wp-content/uploads/2020/05/cropped-RPV-Logo_Also-Non-Rare_300dpi1-32x32.png Rare Patient Voice https://rarepatientvoice.com/ 32 32 Weekly Warrior: Meet Mackenzie https://rarepatientvoice.com/weekly-warrior-meet-mackenzie/ Fri, 15 Mar 2024 16:39:39 +0000 https://rarepatientvoice.com/?p=53183 Our latest Weekly Warrior is Mackenzie, caregiver to her son Josiah. He lives with Familial cold autoinflammatory syndrome, a rare genetic disorder characterized by episodes of rash, fever, and joint ... READ MORE

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Weekly Warrior: Meet Jamie https://rarepatientvoice.com/weekly-warrior-meet-jamie-3/ Fri, 08 Mar 2024 16:01:00 +0000 https://rarepatientvoice.com/?p=53176   Jamie, our latest Weekly Warrior, is a mom of two living with Lupus. She shares her story to make others feel supported in their own health journeys. https://www.linkedin.com/feed/update/urn:li:activity:7171893544230576129

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RPV Celebrates the Rare Community, on Rare Disease Day and Everyday https://rarepatientvoice.com/rpv-celebrates-the-rare-community-on-rare-disease-day-and-everyday/ Thu, 29 Feb 2024 14:16:19 +0000 https://rarepatientvoice.com/?p=53166 Towson, MD, 2.29.2024 – For over a decade, Rare Patient Voice (RPV) has empowered patients and family caregivers to have their voices heard through participating in research studies. On this ... READ MORE

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Pam Cusick Interviewed on Unlocked with Skot Waldron https://rarepatientvoice.com/pam-cusick-interviewed-on-unlocked-with-skot-waldron/ Tue, 27 Feb 2024 14:57:51 +0000 https://rarepatientvoice.com/?p=53160 The lead up to Rare Disease Day continues! RPV’s Pam Cusick recently sat down with communications expert Skot Waldron for an interview on his podcast, “Unlocked with Skot Waldron.” In ... READ MORE

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Wes Michael Interviewed on Live Life Rare Podcast https://rarepatientvoice.com/wes-michael-interviewed-on-live-life-rare-podcast/ Mon, 26 Feb 2024 13:11:22 +0000 https://rarepatientvoice.com/?p=53156 As Rare Disease Day 2024 approaches, Rare Patient Voice leadership have been interviewed on a number of rare disease podcasts. On the Life Life Rare podcast, RPV’s Wes Michael talked ... READ MORE

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