Rare Patient Voice connects patients and caregivers with opportunities to share their opinions through surveys and interviews to improve medical products and services. The organization facilitates communication between patients and researchers in the healthcare industry.

Rare Patient Voice

Rare Patient Voice | 8,184 followers on LinkedIn. Helping patients and family caregivers share their voices | Rare Patient Voice connects patients and family caregivers with all types of research opportunities. We meet patients and caregivers by sponsoring and exhibiting at in-person events such as conferences, meetings, and walks. We also invite patients and caregivers to join our community by working with thousands of patient advocacy and support groups through our referral program.

Peter Ziedins

President, Rare Patient Voice | Helping patients and caregivers share their voices

Wes Michael

Director of Marketing and Communications at Rare Patient Voice

Laura Mullen

Project Manager

Rick DeLuca

ICYMI: Rare Patient Voice has often been referred to as the gold standard in patient recruitment. Hear directly from some of our valued clients via video remarks here: https://lnkd.in/g3enNzKb #PatientRecruitment #HealthcareResearch #RareDisease

At Rare Patient Voice , our origins are in rare disease. We are proud to provide a sounding board for rare disease patients and family caregivers to express their opinions and share their experiences through participation in research. Since January 2020, the FDA has approved 420 drugs for orphan conditions. We have patient panels for 90% of them. These include myasthenia gravis, of which we have 890 patients and 108 caregivers, sickle cell - 1052 patients and 493 caregivers, Behcet’s disease - 109 patients and 10 caregivers, and Huntington’s disease, of which we have 269 patients and 374 caregivers. And hundreds more! For more on our patient panels, including patient and caregiver counts by disease, by country, see the link in the comments below. #raredisease

It's all in the swoop! The blue swoop under our logo, that is. Rare Patient Voice covers 1,500+ rare as well as non-rare diseases and conditions. If you are looking for patients and/or family caregivers of a particular disease for an upcoming study, we can help: https://lnkd.in/eYijZZpt . #PatientRecruitment #patients #caregivers

At RPV, we extend a sincere thank you to all veterans. We remember your sacrifice and thank you for your service. #VeteransDay #freedom #remembrance

Did you know that November is National Family Caregivers Month? Family caregivers are so busy taking care of others that they often forget to take care of themselves. Here is an idea, if you know someone who is caring for a loved one, see what you can do to help. Don't just ask how you can help, but offer an idea because a caregiver is likely to say that they are just fine (which is often not true!). Can you bring them a meal? Give them an afternoon off? Provide a ride somewhere? Lots of ways to help!

Pam Cusick

ICYMI: A recording of the October 24th Rare Patient Voice / Patients As Partners in Clinical Research Community News webinar, "Patient Preferences in Communications for Learning About Clinical Trials," which features the results of a new RPV survey, is now available: https://lnkd.in/eX76b2iu #ClinicalResearch #ClinicalTrials #patients

Need to launch a study overseas? Rare Patient Voice has thousands of patients and family caregivers eager to give their opinions in Canada, the UK, Italy, France, Germany, Spain, Australia, and New Zealand, in addition to the US. Visit https://lnkd.in/eYijZZpt for our patient numbers in each country, and reach out to sales@rarepatientvoice.com for further information.

Does your organization have a leader who can motivate a team , even in the busiest of times? Tiffany White is that person for us! Yesterday, her team hit an all time high winning 200 projects this month! She set that goal early in October and encouraged our sales team all month long. Toward the end of the day yesterday, we were at 193 wins. Tiffany and her team reached out to every client who might be ready to move forward and sure enough by the end of the day they reached their goal. So lucky to have her on the Rare Patient Voice team!

Let's Talk Rare is a new podcast from P4A: Partners4Access. Hosted by Georgie Rack and Owen Bryant, it highlights the most important developments in the world of rare diseases, orphan drug, cell and gene therapy. In this episode, Rare Patient Voice Founder and President Wes Michael discusses the challenges of reaching patients, the rewarding impact of patient involvement in healthcare, and the essential role of patient-centricity in shaping drug development and health technology assessments. "Let's Talk Rare" can be heard on: Apple Podcasts: https://apple.co/3XZ2CBe Spotify: https://spoti.fi/3A5hNRk https://lnkd.in/datehBbV

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