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Having a rare disease or chronic condition can be quite isolating. Does this sound familiar? Your friends and family have never heard of your condition. Your boss or coworkers cannot “see” anything wrong with you, so they dismiss the severity of your condition. Your healthcare provider gives you a diagnosis, but can’t tell you what to expect. The stress and fear can be overwhelming and nobody seems to understand what you and your family are going through.
Patients and their caregivers may feel like they are alone until they find groups such as Ben’s Friends where they can connect with others who have been on their journey. This is a place to gather information from those who have walked your path, and to share guidance with those who are newly diagnosed and their families.
Sharing what you know about your condition is vital to other patients and families, but it is also important for those who do research on your condition to hear your voice. Pharmaceutical companies, device manufacturers, university researchers, and those focused on the economic and social impacts of living with rare and chronic conditions all want to hear about you to understand the way your condition influences your decisions and impacts your day-to-day experiences.
Rare Patient Voice was created to provide patients with and their caregivers with an opportunity to voice their opinions through surveys and interviews to improve medical products and services. Founded in 2013, Rare Patient Voice has over 100 different panels representing over 30,000 patients and caregivers in the US and Canada. The company’s vision is to be the catalyst for patients in all disease categories to share their experiences confidentially with those who can make a difference for those living with rare and chronic conditions.
Rare Patient Voice meets patients and caregivers at events such as conferences, walks, and educational forums, and invites them to join research panels. Participants receive a gift card for joining the panel, and when they participate in a study, they receive $100 for an hour of their time. Over the past three years, Rare Patient Voice has paid patients and caregivers over $1 million dollars for sharing their opinions. Participants benefit from the process on several levels, as one participant noted, “The money is nice, but getting our voices heard is amazing.”
If you would like to share your experience, please join Rare Patient Voice at www.rarepatientvoice.com/sign-up.
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