- Видео 269
- Просмотров 71 715
Rare Patient Voice
США
Добавлен 11 янв 2019
Rare Patient Voice, LLC was launched in 2013 to provide patients and family caregivers opportunities to voice their opinions through participation in all types of research studies. Since then, RPV has awarded over $13 million to patients and family caregivers for their participation.
For patients and family caregivers - we provide opportunities to share their experiences and opinions to improve medical products and services, while earning cash rewards.
For advocacy groups - we partner with patient advocacy and support groups to help increase donations.
For market research firms - we partner with market research firms to find the respondents and patient panels they need.
For pharmaceutical and biotech companies - we provide the respondents and patient communities companies require to support research and business insights needs.
For patients and family caregivers - we provide opportunities to share their experiences and opinions to improve medical products and services, while earning cash rewards.
For advocacy groups - we partner with patient advocacy and support groups to help increase donations.
For market research firms - we partner with market research firms to find the respondents and patient panels they need.
For pharmaceutical and biotech companies - we provide the respondents and patient communities companies require to support research and business insights needs.
Why Didn't I Qualify for a Survey?
RPV President Wes Michael explains why you may not have qualified for a study. We realize this is disappointing - please don't take it personally!
The reason you didn't qualify could be that you may not meet specific criteria. The study sponsor might be looking for a certain number of people who are taking a specific drug, or are of a certain age, or have been diagnosed within a certain period of time, etc. And even if you are exactly the type of person they are looking for, they may have needed 10 patients to participate and just got their 10th, so they don’t need any more.
We hold a monthly raffle for those who have not qualified for a study, to which you are automatically entered. Each ...
The reason you didn't qualify could be that you may not meet specific criteria. The study sponsor might be looking for a certain number of people who are taking a specific drug, or are of a certain age, or have been diagnosed within a certain period of time, etc. And even if you are exactly the type of person they are looking for, they may have needed 10 patients to participate and just got their 10th, so they don’t need any more.
We hold a monthly raffle for those who have not qualified for a study, to which you are automatically entered. Each ...
Просмотров: 85
Видео
Rare Patient Voice Basics
Просмотров 2952 месяца назад
Wes Michael, Founder and President of Rare Patient Voice, discusses how RPV works, what patients and family caregivers can expect, and how you can start participating in all types of research - and get paid for it. To learn more and to sign up to participate in research studies, visit us at: rarepatientvoice.com/youtube/ For more information on the RPV referral program, please visit us at: rare...
Electronic Payments
Просмотров 492 месяца назад
Wes Michael, President and Founder of Rare Patient Voice, discusses how Rare Patient Voice now provides the option for patients/family caregivers to be paid via electronic payments (ACH) or PayPal or Venmo accounts, and how to get started. To learn more and to sign up to participate in research studies, visit us at: rarepatientvoice.com/youtube/
Rare Patient Voice Is Not a Scam
Просмотров 502 месяца назад
Wes Michael, President and Founder of Rare Patient Voice, discusses how Rare Patient Voice is a legitimate, trustworthy company. RPV makes it possible for patients and family caregivers to share their opinions with researchers and companies - and get paid for doing so! To learn more and to sign up to participate in research studies, visit us at: rarepatientvoice.com/youtube/
What About My Check?
Просмотров 1342 месяца назад
Rare Patient Voice President and Founder Wes Michael talks about the payment process for patients and family caregivers who participate in studies through RPV. For more information on RPV, visit: www.rarepatientvoice.com If you're not already a part of the RPV community, sign up today to take part in all types of research studies at: rarepatientvoice.com/youtube/
Can I Use My Cell Phone to Take a Survey?
Просмотров 252 месяца назад
Today, we have our phones with us the majority of the time and use them for nearly everything related to communication. In this video, Rare Patient Voice President Wes Michael addresses the question, "Can I use a cell phone to take part in a study?"
RPV Client Testimonials - Lindsey Wahlstrom-Edwards, Sano Genetics
Просмотров 653 месяца назад
Lindsey Wahlstrom-Edwards serves as Partnerships Lead for Sano Genetics, which combines genetic testing, recruitment, and long-term engagement in one platform, accelerating enrollment and simplifying operations for precision medicine teams driving breakthroughs for patients. Having worked with Rare Patient Voice for a number of years, Lindsey shares that she will continue doing so because the R...
Sharing My Voice: Joanna’s Story
Просмотров 1403 месяца назад
Joanna is from New York. She has always had a rare disease, but she was not diagnosed until she was in her twenties. She says that only a patient can really tell researchers how they are feeling and what their needs are. She also really appreciates receiving compensation from Rare Patient Voice. Sign Up TODAY at the link below! Join Rare Patient Voice and get paid for taking part in research th...
Best Efforts
Просмотров 594 месяца назад
Rare Patient Voice President Wes Michael discusses our use of the term "best efforts," which refers to when our initial estimate of feasibility falls short of the number of respondents you are requesting. You can be confident that we will do our best to recruit more than we've estimated by bringing on our Patient Advocacy Team, but we can't promise that we'll ultimately meet your entire request...
Sharing My Voice: Karrie’s Story
Просмотров 1084 месяца назад
Karrie is from Texas, and she was diagnosed with Lyme disease in 2016. She says there are a lot of people who are unaware that they have Lyme disease, and when they finally get a diagnosis the doctors do not know how to help them. Working with Rare Patient Voice has been great for Karrie. She says the compensation is very fair, and she hopes to help others and raise awareness about Lyme disease...
Come and Listen: RPV Edition
Просмотров 1414 месяца назад
Rare Patient Voice Founder and President Wes Michael offers up a new version of a familiar old tune, this time about the RPV experience. For more about what RPV has to offer for patients, family caregivers, and clients, visit us at www.rarepatientvoice.com.
Sharing My Voice: Natalie’s Story
Просмотров 1375 месяцев назад
Natalie was in denial when she initially received her diagnosis of Narcolepsy Type 2 without Cataplexy. Her participation with Rare Patient Voice helped her to accept her diagnosis as just one part of her life. She is grateful to Rare Patient Voice and encourages others to share their experiences. Sign Up TODAY at the link below! Join Rare Patient Voice and get paid for taking part in research ...
Rare Patient Voice Celebrates Rare Disease Day 2024
Просмотров 1116 месяцев назад
Rare Patient Voice Celebrates Rare Disease Day 2024
The Rare Patient Voice Rap, by Michael and Ashlee Cramer
Просмотров 807 месяцев назад
The Rare Patient Voice Rap, by Michael and Ashlee Cramer
The Gold Standard in Recruiting Patients: Quality Takes Time
Просмотров 1637 месяцев назад
The Gold Standard in Recruiting Patients: Quality Takes Time
Rare Patient Voice Community Members Sharing Their Voices
Просмотров 1879 месяцев назад
Rare Patient Voice Community Members Sharing Their Voices
10 Facts for 10 Years of RPV: Video #10 - Our clients
Просмотров 4810 месяцев назад
10 Facts for 10 Years of RPV: Video #10 - Our clients
Prepare to Engage: Listening to Patients for Greater Participation in Clinical Trials
Просмотров 4510 месяцев назад
Prepare to Engage: Listening to Patients for Greater Participation in Clinical Trials
Workin' 9 to Noon - a new summer Fridays anthem, from Rare Patient Voice
Просмотров 10110 месяцев назад
Workin' 9 to Noon - a new summer Fridays anthem, from Rare Patient Voice
Why would you go through all that and not give out the number?
Please feel free to reach out to us vie email or phone: ContactUs@RarePatientVoice.com (443) 986-1949
What is the customer service number? I'm struggling to find that!
Please feel free to reach out to us vie email or phone: ContactUs@RarePatientVoice.com (443) 986-1949
Can confirm, RPV is legitimate. I've qualified for 2 focus groups since joining their list. One paid $150 (it was a 60 minute Meet meeting.)
Thanks for being part of the RPV community!
Rare patient Voice has been nothing but professional and very helpful with any questions. I will go as far to say that RPV has helped through what they do. Find better help with the condition I live with. Keep up the great work it is very much appreciated.
We're glad you're part of the RPV community!
RARE PATIENT VOICE IS NOT A SCAM AT ALL!! I HAVE AND WILL CONTINUE TO DEAL WITH THEM!!
Happy to have you in the RPV community!
I wish i could, i have a rare disease called LCH Langerhanscel hystiositose, my cel mutation they have never encountered, but i am from the netherlands
I love it, Wes! And I can say I knew you when you first discovered your "voice" with Be Our Guest!
Glad to see you are having fun! Well done.
Love this! You're awesome Wes!
Ehlers-Danlos syndrome sucks lol
It does indeed, @JinxedAF. We stand with you, today and everyday!
I know that RPV is so caring and knows the process for screening. You all do it right. 👍👍👍
Thank you for the kind words and for being part of the RPV community!
Your videos are worth watching
Thank you for your kind words!
0:35
Wes, 2023 was a great year and your organization is my favorite group to listen, explore and do surveys. Congratulations to all the award winners. Your honest and forth coming information is top. I’ve been with you since the start. Thanks!
Thank you for your support and for being part of the RPV community!
Thank you 💕 just diagnosed this July and having the same issues.
What button am I supposed to push to be part of this survey
Hi, Antonett - first, please take a few minutes to join RPV by clicking on the button in this link and filling out the information. Then we can see if there are open studies that match with your medical conditions. If there is a match, you will receive an email inviting you to participate in a study. rarepatientvoice.com/for-patients/patient-and-caregiver-sign-up/
Thank you for sharing. Having a life long disease is difficult but thanks to you sharing makes it easier for us. ❤
How and when are any workers going to contact me?
Do you have a medically diagnosed disease or condition, and have you signed up to take part in studies? Here is more information and note the button on the bottom of the page to go to the sign up form.
rarepatientvoice.com/for-patients/patient-and-caregiver-sign-up/
This is actually sounding totally useless.
We're sorry you feel that way. Thanks for watching the video and hearing about how Rare Patient Voice began. We are celebrating our tenth anniversary this year and the video is a brief reflection on the history of the company.
En français s il vous plaît
Please check out our global website, which has French translation capabilities: rarepatientvoice.global/
Thank you for sharing your journey! What a blessing you are to others.
❤
Congratulation to you and the team at Rare Patient Voice. Happy 20th!
Thank you so much!
These surveys are scams. I don't either qualify or taken the right medication despite I'm an person with disabilities. Stop lying to the people 🤬
We connect patients and family caregivers with opportunities to take part in research studies. If there are no research studies for your particular condition or if you don't meet the criteria our client has laid out, you will unfortunately not have qualified for a study. Please keep trying and remember that we also do a monthly gift card raffle for everyone who has not qualified for a study.
@@RarePatientVoice will do and thank you
I'm not buying this at all 😅
We're sorry you feel that way. Howard is a real patient who has had a positive experience with us.
@@RarePatientVoice my apologies in advance
I felt this is a scam as i don't seem to be qualified and I'm disabled with chronic health conditions who needs money. Stopped wasting people's time
I take RPV surveys, I don’t qualify for all but have qualified for many others and have been paid.
@@MWieandSeamstresswithStyle I never got paid from these surveys 😞
Our clients have very specific criteria for their studies. Unfortunately, it sounds like you haven't met those criteria as of yet, or perhaps the study has filled before we heard from you. In any case, please know that we are very much a legitimate company.
@@MrMartellSincere Often there is a very brief screener that needs to be completed before we can tell if you meet our client's criteria for participating in a study. If you fill out the screener but based on your answers don't qualify for the study, your answers are not used in any way and no payment is issued because you haven't been accepted to participate in the study itself.
@@RarePatientVoice I understand now. Just trying to get money from it but it doesn't seem to like me. Jobs these days are difficult to come by
Thank you for starting this very important conversation. 😀
Wes I began your journey along with you as a patient with MS. RPV helped me talk about my issues, voice my concerns, fill out many of surveys to help other as well as myself. Those of us with rare diseases needed this amazing platform to encourage us to be strong, open to new ideas and always being there for others as well as ourselves.
Thank you for your kind words, Maria! We are glad you're part of the RPV community.
Thanks for sharing your story about HS.
I don't see a button
Apologies. Please use this link and you'll see a button underneath the video: rarepatientvoice.com/youtube/
❤️💙💜💚
❤️❤️❤️
Happy New Year and Happy 10th Anniversary to RPV! I absolutely love y’all and love what you do for those of us with rear and long term diseases. I really enjoy helping and giving information for others to learn from, compare to or help with. 🎉🎉🎉🎉🎉❤❤❤❤❤
Thank you very much for your kind words, Maria! We are happy to have you in the Rare Patient Voice community.
You'll always have our support Matt Churchward....ALWAYS! 💯
I just signed up!! I’m excited 😊
Welcome aboard! Thank you for signing up with Rare Patient Voice - we are happy to have you.
What and How did you verify that which you signed up?
Wonderful men! Undeniable truth. Rare diseases affect mental health tremendously. Thanks for making this wonderful video! 💛🤗
Thank you for your feedback! We are proud to support "Beyond Limits" from rare disease advocate David Ross.
Lose the music.
Thank you for your feedback.
Thank you for all you do Dan! ✨⭐
Thank you 💓
Thanks for recording your video, Jason! We appreciate your insights.
AMEN BROTHER 🥺😭💔
I developed Marburg MS last year. I hope doctors can find a cure for demylenating disorders
We hope Danielle's story was meaningful to you! At Rare Patient Voice, our mission is to help patients and caregivers share their voices with researchers and companies developing new products to improve lives.
Thank you for the much needed info and chance for a gift card ;)
You're very welcome, Cher!
Love you lil sister
Thank you Jerron!
@@RarePatientVoice your welcome
❤️❤️❤️
❤️❤️👏❤️❤️
? p♥r♥o♥m♥o♥s♥m
Awesome job!!!!
She did great!
You were awesome 👌
She is wonderful!
You did great Tonya!
She is amazing!
Thank you for giving back
Thank you D Singleton for your kind words.