Rare Patient Voice

It’s a beautiful day in Washington DC for Rare Patient Voice to recruit patients at the Lungevity Breathe Deep lung cancer walk.

Rare Patient Voice is excited to be in 2 places at once again!🌍 I’m in Newport Beach, CA, this weekend at the International Pemphigus Pemphigoid Foundation, while our President & Founder, Wes Michael, is in D.C. today at Breathe Deep D.C. with the LUNGevity Foundation. #Pemphigus #Pemphigoid #LUNGevity #breathdeep

Our latest #WeeklyWarrior is Julie, who lives with MS. Diagnosed in 2019, one of the things she has learned since then is that as a patient, she needs to be her own advocate: "You know yourself best and you are worth it, so never give up fighting!" Read her story: https://lnkd.in/es46r7AQ #ChronicIllness #PatientAdvocate #MS

🌍 Excited to be attending the World Orphan Drug Congress Europe in Barcelona. 🙋♂️ What is my first impression? It is inspiring to see the incredible stories and innovations shaping the rare disease community while connecting with new people. ~> A highlight from us at Rare Patient Voice: Rare Caregiving Report, which explores the emotional, financial, and career impacts of caregiving. It is a crucial part of the rare disease journey that often goes unnoticed. If you're here, don’t miss the chance to stop by and check out our findings. 🤷♂️ But why? ~> It is importan to keep the conversation going about #rare_diseases and the important role #caregivers play. #WorldOrphanDrugCongress #RareDiseases #Caregivers #RPV

Happening Tomorrow! Rare Patient Voice is sharing new results from a survey conducted amongst their patient participant community. Pam Cusick, Senior Vice President, will go through the results, and what they mean for pharma, before a live audience Q&A. Attendees will hear patient perspectives on: • Whether or not they’ve participated in a clinical trial • Their relative awareness of clinical research • Their content preferences for learning about clinical trials • Who they view as trustworthy sources when it comes to information • Overall barriers to and concern about research Register here: https://lnkd.in/gr2Pdycj #patientsaspartners #clinicalresearch #clinicaltrials #patientperspective

I am excited to share that I am attending National Organization for Rare Disorders for the first time! I am representing Rare Patient Voice and look forward to connecting with patient advocates, industry partners and more. If you’re also attending, I would love to connect! #NORDSummit #rarediseases #RarePatientVoice

It's easy to get counts for your studies! 1. Viewing updated panel counts at https://lnkd.in/gZgXy6vm  2. Self-generating a proposal with our PAM system at https://lnkd.in/g87aedqg  3. Sending your request to the sales team at sales@rarepatientvoice.com

My first experience attending the Rare New England Annual Conference was terrific. From the informative presentations, friendly fellow exhibitors, and of course the lovely patients and caregivers, to the gracious welcome and beautiful campus of The Jackson Laboratory, it was an amazing day in Connecticut! Thanks to everyone who stopped by the RPV table. #RareDisease #patients #caregivers Ronda Thorington Melody Joy Paine Nicole White Darby Gavin The Hole in the Wall Gang Camp Perkins School for the Blind

A recent study of over 735 participants provided a deep dive into the lived experiences of caregivers for individuals with rare diseases. In our recent RARE Rev-inar episode 013, Wes Michael, founder of Rare Patient Voice, who conducted the survey, talked us through their findings, and we also heard from husband-and-wife duo, James and Celia Chartres-Aris who talked candidly about the impact rare disease can have on a romantic partnership. Read here: https://lnkd.in/ewv5qBzK #Mitochondria #MitochondrialDisorders #RareDisease

We're looking forward to participating in the Rare New England 2024 Annual Conference: Rare Together - Uniting for Progress! Stop by the RPV booth and say hello to Laura Mullen tomorrow in Farmington, CT! #RareDisease #patients #caregivers