Interview for Rare Patient Voice

1. Can you tell me about Rare Patient Voice, its purpose, and your role within the organization?

Rare Patient Voice is a company that provides patients and family caregivers an opportunity to participate in all types of research, including market research, health economics outcomes and real-world evidence, user experience/human factors studies, and clinical trials. The RPV community includes over 125,000 patients and caregivers across more than 1,500 diseases, both rare and non-rare, in nine countries. I’m Director of Marketing and Communications for the company.

2. How are Rare Patient Voice community members able to qualify for clinical trials or studies?

Upon signing up with Rare Patient Voice, members provide basic information about themselves and their medically diagnosed conditions, or those of the loved ones they care for. As we receive requests from researchers with criteria for respondents to participate in a study, we match those criteria with the information our community members have shared with us. We take privacy and security seriously; we never sell or share our members’ personal information.

3. What types of research studies can patients and caregivers participate in?

We recruit for all types of research studies, from market research, which can mean online surveys, interviews, or focus groups, to clinical research, which includes clinical trials.

4. Is Rare Patient Voice observing National Caregivers Month to shine a light on caregivers for people with rare diseases?

The dedication of caregivers can be a truly remarkable thing, as they work so hard and can encounter many challenges, stresses, obstacles, and issues in caring for a loved one. We are looking forward to National Caregivers Month and continuing to highlight the support family caregivers provide to their loved ones with rare diseases. At RPV, we provide opportunities all year long for family caregivers to participate in research studies in which they can have their voices heard.

5. Going forward, what do you hope to do and/or see done for the rare disease caregiver community and those living with rare diseases? What can you tell us about the things you still hope to accomplish?

Patients and their family caregivers are on the front lines of the diseases impacting their lives. Sharing information with researchers can help in the development of new treatments, services, and devices to improve lives. We would like to continue inviting more family caregivers and patients to join RPV, so that more diseases, both rare and non-rare, can be covered. Our goal is to help all patients and family caregivers share their voices.

Those interested in joining the Rare Patient Voice community and participating in paid research studies can learn more and sign up at https://rarepatientvoice.com/for-patients/patient-and-caregiver-sign-up/.

Laura Mullen, Director of Marketing and Communications, Rare Patient Voice