Wes Michael
Value of your voice
The work of caregivers in supporting their loved ones often demands significant time, attention, and patience. Whether suddenly thrust into the role or a long-term supporter, caregivers routinely become first-hand experts on their loved one’s condition, including their diagnostic journey. Caregivers also have experiences, observations, and viewpoints all their own. Their opinions on topics such as the efficacy of treatments, interpersonal dynamics, and how taking on the responsibility of caregiving has affected them personally are extremely valuable to those working to improve patients’ lives.
Rare Patient Voice LLC specializes in connecting rare and non-rare disease patients and caregivers with opportunities to share their viewpoints with the researchers and companies who design, develop and improve products and services. Launched eight years ago, the RPV community now includes over 100,000 people in the US, Canada, the United Kingdom, Italy, Germany, France, and Spain who have signed up to take part in research studies and are compensated for their time. The company has paid patients and caregivers over $7 million since 2013, and has completed over 5,000 projects.
In addition to enabling patients and caregivers to take part in market research, clinical trials, interviews, and surveys, Rare Patient Voice also periodically surveys them on meaningful topics. A few years ago, RPV surveyed a segment of its panel on rare disease, asking questions on family and social interactions, the effect of the American Care Act (ACA)/Obamacare, and more. Findings from the case study “The Impact of Rare Diseases on Patients and Caregivers” included:
- The time required to deal with the rare diseases of their loved ones takes caregivers’ time away from spending it on personal activities and family interactions.
- The study found that the impact on emotion of these rare diseases is especially high. Relatively more caregivers deal with anxiety, while more patients feel depressed.
- According to numerous families, their financial situations have been negatively affected when dealing with the rare diseases. Many patients and caregivers end up forgoing opportunities in both employment and education. Many also opt to work part-time instead of full-time.
The input of both patients and caregivers is critical to continued progress towards disease treatments and cures. Caregivers are in the unique position of being not only a close observer of their loved one’s condition, but a partner in the day-to-day challenges of battling a serious disease or chronic condition. Rare Patient Voice helps to make caregiver voices heard by decision makers developing new treatments and services. Have your voice heard - and get paid for your valuable participation.