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Creating Awareness with Rare Patient Voice

Updated: Mar 20



I am partnering with Rare Patient Voice to double our impact, and create awareness. As a self proclaimed patient advocate, I am excited to align together to share our passion, and further help others. As an IBD patient, I have become familiar with Rare Patient Voice on my Instagram feed, but if you haven't seen all of the exciting things they have going on, stop what you're doing, and read my post.


What is Rare Patient Voice, one might ask? RPV connects patients and family caregivers of rare and non-rare diseases with opportunities to share their opinions with companies and researchers by participating in all types of research studies. These include surveys and phone interviews, online bulletin boards, focus groups, clinical trials, and more. As someone with Crohn's disease, research is so critical because currently there is no cure. Research creates new medications, better opportunities and brighter futures by gathering valuable information from patients and caregivers alike. I have no doubt there will be a cure someday coming down the pipeline. I have 3 kiddos, and I want to be here to witness all of the beautiful moments in their lives!


Currently, the Rare Patient Voice community boasts over 100,000 patients and family caregivers, supported by over 4,000 Referral Partners. They collaborate with non-profits, organizations, advocate influencers, and IBD Warriors and patient advocates such as myself.


Do you currently suffer from a rare or non - rare disease? Do you like to create awareness about your condition, and get paid while doing so? Rare Patient Voice connects patients and family caregivers to paid medical studies and surveys. They offer a generous $120 per hour to participants. If you're out there reading this, and you're intrigued, please click HERE to read more on how to participate and get paid.


As always, thank you for reading. Make sure you're heard and not just seen. We all have a voice, and right now it's time to stand up and use it.


"Awareness is like the sun. When it shines on things, they are transformed."

-Thich Naht










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