As a lead up to Rare Disease Day 2024, PicnicHealth recently interviewed Rare Patient Voice‘s Marketing and Communications Director, Laura Mullen, on RPV’s role in research, how we work with patients and family caregivers, and more. The article can be found on their website: https://picnichealth.com/patients/resources/blog/making-a-difference-a-closer-look-at-rare-patient-voices-role-in-research
In celebration of Rare Disease Month, we are thrilled to shine a spotlight on Change Champions, dedicated partners, and organizations making a lasting impact on rare disease research throughout the year. At the forefront of this movement is Rare Patient Voice, a remarkable resource founded with a singular mission – to provide patients and family caregivers a platform to be heard by actively participating in diverse research endeavors, including rare diseases.
This initiative thrives on direct connections and word of mouth, cultivating a vibrant community of over 145,000 individuals across the globe.
To delve into the significance of rare disease research and advocacy, we had the privilege of sitting down with Laura Mullen, the Director of Marketing and Communications at Rare Patient Voice.
Hi, Laura! Thanks for joining us today. Can you tell me a little more about Rare Patient Voice?
At Rare Patient Voice, we connect patients and family caregivers with the opportunity to voice their opinions through participating in all types of research to improve medical products and services. This empowers them to be heard and enables researchers and companies to include the insights of patients and family caregivers in their decision-making.
What other tools and resources do you have for patients?
Many patients tell us that participating in research (i.e. talking with a moderator, engaging with other patients in a focus group) can be very helpful, and is similar in some ways to being part of a support group. Through our Weekly Warrior and Sharing My Voice video programs,we provide platforms for patients to share their stories and inspire other patients along their journey. We also provide information about advocacy and support programs that patients might not already know about on our website and in our newsletter.
From our experience, participation in research can be an empowering way for patients to transform their own journeys. In your words, why is rare disease research important?
According to EURORDIS, 300 million people are living with a rare disease worldwide, with over 30 million in the United States alone. There are thousands of known rare diseases and only a fraction currently have safe, effective treatments. Research is a vital step in the process of developing new treatments and cures.
Agreed. Oftentimes figuring out how to start is the hardest part. What should patients consider if they want to contribute to research but don’t know how?
There are many different types of research, ranging from market research, health economics outcomes, real-world evidence, and user experience/human factors studies, to clinical trials. Many research studies can be done from home, online, or via telephone. Patients should consider what is most convenient for them and whether they are interested in a specific kind of study. Rare Patient Voice connects patients and family caregivers with opportunities to take part in all kinds of research and is easy to join.
Yes to all of this. Staying informed about what opportunities are available to you is key to making a difference. How can patients keep up with new opportunities at Rare Patient Voice?
Individuals with a professionally diagnosed medical disease can join the Rare Patient Voice community by providing some basic information about themselves and their health, which is kept confidential. They are then alerted via email when recruitment is underway for a study that matches their disease or condition. Depending on the study, we may also contact them by text message. Once they have joined RPV, members will also receive a monthly newsletter that provides news, and information, and highlights open study opportunities.