The first time I went to recruit patients for a market research panel was at the National Hemophilia Foundation annual meeting in Tampa in 1998. What an eye-opener. I had studied Hemophilia on the Internet, but I hadn’t met members of the bleeding community. Families upon families came by, met us (my wife came along to help as well as co-workers) and told us their stories. One in particular stayed with me. A mother of a small boy told us how she had been stopped in a department store. Her son was bruised, and the security guard, with good intent, had summoned the police as he assumed it was a case of child abuse. He was bruised from hemophilia, and the mother could not be more loving! She barely escaped an appointment with social services. And from then on she carried a letter from the hematologist explaining hemophilia so she stands a fighting chance of educating others who are trying to help.
Stories like those drew me to focus on rare diseases. Families were so relieved to share their experiences and advice with other families, not feeling so alone. The lack of knowledge and understanding of conditions like hemophilia by the general public puts a tremendous burden on the suffering families, yet they never tire of educating their friends and neighbors. I was happy I could help those families voice their opinions to the pharmaceutical companies to help improve products and services.
Over the years, there has been more and more attention to rare diseases. Large companies like Pfizer, Shire, and GSK have rare disease units. At the same time, pharmaceutical companies have gained greater interest in hearing not only from physicians, but also from patients. But there was a problem. There wasn’t a way for many patients and caregivers with rare diseases to express their opinions in sufficient numbers. From that gap Rare Patient Voice was born. To actively invite patients and caregivers with rare diseases to join a community and give them the opportunity to express their opinions in surveys and interviews to market research companies. We go to patient events all over the U.S. to meet with patients and advocates to understand their stories, explain how research is voluntary and confidential and how participating can help them and their entire community.
Rare Patient Voice was incorporated in July 2013, our first panel of Hemophilia patients was begun at this year’s National Hemophilia Foundation annual meeting in October, and we’ve already conducted 13 projects with 9 market research companies in just 2 months. In hemophilia and other rare diseases as well. Our hemophilia community is over 250 members strong, and growing daily. Patients enjoy getting a $10 gift card immediately for joining and for quick payment of cash rewards for participation, and they tell others they know who also join.
We are busy building other rare disease communities to provide as many patients as possible the chance to voice their opinions. We’ll use this blog to keep you informed of our progress. And we invite your comments!