family matters

Although RPV connects patients and caregivers with research opportunities, they do not have access to the study results conducted by their clients. From time to time, RPV conducts internal studies and shares the results with participants. In a recent study, patients were asked several thought-provoking questions about their conditions. One question asked: Imagine if you could travel back in time and meet the person you were when you or your loved one were first diagnosed. What advice would you give them? How would you describe to that person how you feel now?

Here are a few responses from RPV’s Schizophrenia patients and their caregivers:

·          …you’re not alone in this fight, that there are others, so many others going through the same thing with their loved ones, to find as many support people.

·          … trust me as your mother to allow you to be successful and be able to move forward in your life. And it may be scary, just trust me. And then I would describe my son as a person that probably felt afraid. He felt afraid about what was changing to him and what’s happening to him, and the voices that he started hearing.

·          … no matter what they go through in life, as long as you have will and determination, you can get through anything. I would tell him how much I love him. I would spend more time with him one on one. I would have more activities, do more activities with him. But I would also just advise him more about his personal value and try to raise his self-esteem enough so that he can endure all the troubles that come and the hardships that come with this disorder.

·          would let them know that it’s going to be okay, and that all of the trials and errors are going to be worth it in the end. And it’s a lot easier to deal with now.

RPV currently has nearly 200 studies open for patients and caregivers. You can see some of these opportunities here: []

Patient and caregiver voices need to be heard so companies can develop products and services that have a meaningful impact on their lives. The more RPV can engage with patients and caregivers, the more RPV can advocate for them and help their voices to be heard.

This article was written based on a previous America’s Heroes Group “Military Families Matter” show in December of 2020 with co-host Keisha Jackson, guest Pam Cusick, Vice President, Rare Patient Voice (RPV), as a special guest panelist. RPV provides patients and caregivers with opportunities to voice their opinions through surveys and interviews to improve medical products and services—while earning $100 per hour.

To learn about RPV and start getting paid for your opinions, visit [] to sign up.

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