Patient Archives - Rare Patient Voice Helping Patients with Rare Diseases Voice Their Opinions Tue, 24 Feb 2026 15:09:12 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.3 https://rarepatientvoice.com/wp-content/uploads/2020/05/cropped-RPV-Logo_Also-Non-Rare_300dpi1-32x32.png Patient Archives - Rare Patient Voice 32 32 Wes Michael Visits Skot Woldron’s Unlocked for Rare Disease Day 2026 https://rarepatientvoice.com/wes-michael-visits-skot-woldrons-unlocked-for-rare-disease-day-2026/ Tue, 24 Feb 2026 15:09:12 +0000 https://rarepatientvoice.com/?p=54769 With Rare Disease Day 2026 coming up later this week, Wes Michael recently discussed the power of the rare disease patient voice, the importance of trust, and RPV’s joining with ... READ MORE

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]]> Black History Month Meets Rare Disease Day https://rarepatientvoice.com/black-history-month-meets-rare-disease-day/ Mon, 09 Feb 2026 15:34:16 +0000 https://rarepatientvoice.com/?p=54699 February is Black History Month, and in anticipation of Rare Disease Day on February 28, we are highlighting inventions and developments by African Americans that have provided support and improvements ... READ MORE

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]]> Hear How RPV Was Created to Connect Patients, Caregivers, and Researchers https://rarepatientvoice.com/hear-how-rpv-was-created-to-connect-patients-caregivers-and-researchers/ Thu, 29 Jan 2026 16:30:31 +0000 https://rarepatientvoice.com/?p=54615 Rare Rebels™ is an ongoing effort to map the rare disease ecosystem through the people leading the charge, documenting how change happens and how connections across science, advocacy, infrastructure, and ... READ MORE

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]]> A Look Back at RPV’s 2025 https://rarepatientvoice.com/a-look-back-at-rpvs-2025/ Mon, 05 Jan 2026 16:13:50 +0000 https://rarepatientvoice.com/?p=54398 2025 was an exciting year for us at Rare Patient Voice! In this video message, recorded in late December, RPV President and Founder Wes Michael looks back at 2025 and ... READ MORE

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]]> Season’s Greetings from Rare Patient Voice! https://rarepatientvoice.com/seasons-greetings-from-rare-patient-voice-2/ Mon, 22 Dec 2025 17:42:42 +0000 https://rarepatientvoice.com/?p=54380 It’s been a very busy year at Rare Patient Voice, and we hope to soon join our zebra friend Rarity in taking a cozy holiday break! In the meantime, here are ... READ MORE

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