PATIENTS AND CAREGIVERS ON BEING PART OF
THE RARE PATIENT VOICE COMMUNITY
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.
I have been a part of this site for some years now and have really enjoyed the things I've learned.
It is satisfying to know I can do my part to help get feedback to companies about our rare disease.
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!
Everyone associated with any of the panels is always professional, courteous and friendly. They also seem compassionate and truly interested in hearing patient experiences.
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.
The process was very easy and I felt as if my opinions were valued.
I love how great the Rare Patient Voice staff is with communication. If only all businesses were run so well!
It’s reassuring to know that they’re asking real people, that the opinions of people who live with these conditions are listened to.
Thank you for these opportunities! I hope that my responses will help other MG patients.
I enjoyed being the "expert" and being able to share some of my son's story and our experience.
I love the way this organization treats me.
I appreciate that you allow us to participate in these studies. The money helps to pay my co-pays and I am grateful.