What's New at Rare Patient Voice?
We’re Back in Action at Patient Events!
After over two years, many in-person patient events have come back! At Rare Patient Voice, we love to attend events where we can meet patients and family caregivers. If your organization is having an upcoming event where you think RPV should be, please let us know! Here are some shots of RPV in action at events we have recently attended.
We Value Your Time!
We appreciate your participation and being part of the RPV community, even if you don't qualify for a particular study. Each month we will automatically enter people who tried but did not qualify for a study into a raffle for a $100 Amazon gift card. The randomly chosen winner will be notified via email. Congratulations to our latest winner, Corrina!
Share Your Voice and Receive a Rarity!
If you’re part of the RPV community and enjoy participating in research studies, let us know! Join the growing group of patients and caregivers who have recorded videos about their Rare Patient Voice experience: https://rarepatientvoice.com#sharevoice. To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card! Follow these steps to record and submit your own video!
Step 1: Scan with code below with the camera app from your Apple/Android mobile device or click the link below!
Step 2: Download the Storyvine app from the App Store or Google Play
Step 3: Film and upload your video!
Sofie’s Journey began with Sofie Levy, who had her first seizure at 5 years old. After years of pursuing treatments and options, the Levy family was given the opportunity of brain surgery for Sofie. Sofie is now in University and 13 + years seizure free. To further focus their passion for epilepsy awareness, and to ensure others are afforded great epilepsy care, the Levy Family created EPILEPSY AWARENESS DAY with the first event held on November 7, 2013.
“The Epilepsy Awareness Day at Disneyland has become a unique opportunity for patients with epilepsy and their caregivers to interface with non-profit and other groups to openly communicate about their needs and available services,” said neurosurgeon Dr. Gary Mathern. “This is a model meeting that should serve as an example for others around the world.”
“The good we are doing, it’s an incredible feeling that goes beyond description,” said Brad Levy, Co-Founder. “We are now offering resources helping with physician referrals and working with both pharma and providers on many new projects. We have an updated website featuring photo and video galleries of guests as well as many of the nation’s leading physicians giving talks on their field of expertise.”
“People with epilepsy and their families/caregivers represent the most important contributors to our quest to find cures. Now, more than ever, they want to be educated on their condition and learn about the newest advances in treatment. EAD is the venue that brings together the entire epilepsy community around this common goal to the benefit of everyone involved.” Scott Perry, MD
“EADDL is so unique because it is the only event dedicated to bringing families living with epilepsy in direct contact with experts from around that globe that manage and treat epilepsy. It is so powerful when those impacted by epilepsy can learn from the experts, ask questions, and understand the different services and options that are available to them. Families leave feeling supported and empowered. It’s a beautiful thing!” Tracy Dixon-Salazar, PhD.
The 10th annual Epilepsy Awareness & Education Expo and Epilepsy Awareness Day for 2022 is in the works. The Expo, at the Disneyland Hotel Conference Center, will fall on Monday, October 31 and Tuesday, November 1, and our park day on Wednesday, November 2. This larger than ever event will also include an all-inclusive Halloween costume ball in the Magic Kingdom Ballroom on Halloween night! Rare Patient Voice will be in attendance and signing up patients and family caregivers at the event. For more information, please visit http://www.epilepsyawarenessday.org/.
Would you like to refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Get to know our team! Each month we will feature one RPV staff member. This month, Melanie Havert, our Patient Outreach Manager, is in the spotlight.
Melanie joined Rare Patient Voice in 2017 and currently serves as Patient Outreach Manager. Prior to working for RPV, she had a career in the nonprofit space. A true “people person,” she genuinely enjoys her interactions with clients, researchers, caregivers, and patients. As Melanie says, she is a firm believer that true happiness is achieved through optimism, minimalism, and serving others.
“Living with chronic health conditions can take its toll on one’s mind, body, and spirit; one may experience moments of feeling unheard, misunderstood, isolated, and even feeling completely overwhelmed at times (at least I have had these feelings as a patient as well as a caregiver to family members with chronic health conditions). Rare Patient Voice provides an outlet for patients and family caregivers to share their experiences with researchers and companies working towards improving lives.
In my role as Patient Outreach Manager, I love connecting with people, hearing their stories, and learning what drives them. Making a genuine connection with patients, caregivers, groups, and organizations, as well as our clients, is incredibly fulfilling! I’m so grateful that RPV has given me the opportunity of being my true organic self, and the gift of being able to connect our community with researchers to gain a voice and be heard is wonderful!”
In her off hours, Mel loves spending time outdoors, including off-roading, hiking, ziplining, visiting theme parks, and exploring new things with her thrill-seeking daughters.
Frequently Asked Questions
Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.
How will I be paid?
You will earn $100 per hour for participating in studies. We pay by check to ensure patients can use their compensation in any way they wish.
About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition. RPV has paid patients over $9 million dollars since 2013 for participating in research studies.