Testimonials

“It’s rewarding to know that my participation in research may one day save not just other people’s lives, but mine as well. When a study is over I feel fantastic. Not only do I get the pleasure of a job well done, but I also get valuable knowledge and insight into my health.”
– Lacolya

“It’s just nice to know that people actually care and want to know what we go through and hope that we find cures for these diseases we struggle with!”
– Tisha

“It’s refreshing to contribute personal experience in Rare Patient Voice studies. Everyone with Myasthenia Gravis deserves opportunities to be heard and to receive compassionate care that helps them live their best quality of life.”
– Sherri

“I have been connected to Rare Patient Voice for a while and appreciate being included in studies that I qualify for. It lets me know that I am seen, heard, and respected.”
– Daniel

“Every study I do for Rare Patient Voice has been smooth with quick payment.”
– Patrick

“RPV studies are always informative and interesting. I'm glad to be a member and help with my experience.”
– Philip

“I love Rare Patient Voice. Easy to do surveys and the pay for your opinion is very generous. Thank you for giving me a say.”
– Sherry

“I’m very pleased to have a chance to participate in this study. I’m hoping my experience will help others who may be struggling with the same issues.”
– Jamie

Allowing a safe platform to share my story and know that it is contributing to assist researchers is not only cathartic, but allows me to feel that my experience and suffering is not in vain. Others will benefit and do better because of my experiences.
– Ariana

I have been a part of this site for some years now and have really enjoyed the things I've learned.
– Claudia

It is satisfying to know I can do my part to help get feedback to companies about our rare disease.
– Angela

Very easy to complete and I always look forward to offering my opinion as well as receiving the extra compensation - because disability just isn't enough for me to survive on. Every bit extra helps A LOT!
– Shereese

Everyone associated with any of the panels is always professional, courteous and friendly. They also seem compassionate and truly interested in hearing patient experiences.
– Davina

I am glad to be working with your company. This was my first experience, and I feel comforted that you run such a professional and considerate organization.
– Benjy

The process was very easy and I felt as if my opinions were valued.
– Lisa

I love how great the Rare Patient Voice staff is with communication. If only all businesses were run so well!
– Melissa

It’s reassuring to know that they’re asking real people, that the opinions of people who live with these conditions are listened to.
– Elayna

Thank you for these opportunities! I hope that my responses will help other MG patients.
– Lisa

I enjoyed being the "expert" and being able to share some of my son's story and our experience.
– Abbie

I love the way this organization treats me.
– Marian

I appreciate that you allow us to participate in these studies. The money helps to pay my co-pays and I am grateful.
– Jane