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Wes Michael of Rare Patient Voice

Image of Wes smiling into the camera, wearing a white shirt, black suit jacket and black rimmed glasses, in front of a blue background.

Wes Michael’s belief in the power of patient insights in improving treatment options, and ultimately lives, motivated him to found Rare Patient Voice in 2013. He discusses how his company is uniting patients with industry, and providing employment opportunities to those with a rare disease

RARE entrepreneur series: meeting the beating hearts behind the RARE brands

Logo read RARE PATIENT VOICE LLC in dark blue letters in a blue circle with an orange background fading out to the right. Underneath in white writing in a dark blue banner reads Also non-Rare!

Rare Patient Voice connects rare and non-rare disease patients and caregivers with opportunities to share their input with companies developing products to improve lives. RPV’s community of over 100,000 was built since our launch in 2013 through attending healthcare awareness events and working with advocacy groups worldwide. We cover 700+ conditions and have completed over 7,000 projects in the US, Canada, UK, France, Germany, Italy, Spain, New Zealand, and Australia. We find hard-to-reach patients and caregivers to participate in market research, health economics outcomes and real-world evidence, user experience/human factors studies, and clinical trials.


What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

There were several driving forces that led me to begin a business in the rare disease space. I had been working in the haemophilia space and had built a patient community there for a client. I saw firsthand how eager patients and family caregivers were to share their opinions and insights, and also how difficult it was to locate them, so there was clearly an unmet need. I had the idea to start a patient group (or “panel” in market research talk) for many years, and the rare disease area was a natural for me; it was underserved, as other companies were focusing on more mainstream patients and diseases. The other driving force was personal–my employer had asked that I work without pay for several months, and I thought, if I’m not being paid, why not try this idea that I’ve had. In the meantime, my wife, who had been out of the workforce raising our children, had found a job. So the timing was perfect!


How does your business benefit the rare disease community?

Rare Patient Voice benefits patients in several ways. We offer them a chance to share their opinions and experiences so that companies can create and improve treatments, products, and services to improve lives. We also compensate them for their time. As a matter of fact, we’ve paid patients and caregivers over $9m (US dollars) since our founding in 2013. And finally we’ve offered employment to a number of people in the rare disease community. It’s been a real win/win all around!

Image of Wes wearing a white RPV branded t-shirt and black trousers, with a conference lanyard, next to a table with a white table cloth and a small RPV roller banner, leaflets and business cards, and a large RPV roller banner on the left.
Wes Michael in Pittsburgh, Pennsylvania, manning the RPV booth at the 3rd Annual International Metabolic Conference for Fatty Acid Oxidation Disorders.


What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

I asked around to confirm there was an unmet need to find rare patients and family caregivers for research. I read books on setting up your own business, and I went to a small business seminar that covered what steps to take legally, financially, etc., to start a business. Fortunately, I had developed a lot of contacts from many years in the market research field, and all of them were very supportive. A former colleague of mine who had set up a business years before, Jonathan Kay, was and continues to be particularly helpful.


How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

Fortunately, my health and that of my family has been good. At Rare Patient Voice, we have brought on to our staff people from the rare disease community, including a number of patients and parents. We met them at in-person events where we were recruiting patients, and they began working for us part-time, going to patient events and representing us. Over time many showed how good they were and had interest in coming on full time. I am amazed at how well they do. Several, for example, have multiple sclerosis, and their work is so good I often forget the burden they are suffering.


What advice do you have for someone starting their own business?

My advice is not to look at all the reasons not to start a business. You can always find reasons why it might not work. Focus on how it will work and be willing to adjust. Keep learning! Be ready to plunge into the water and get started!


What are the most rewarding aspects of establishing and running your own business?

It feels great to create something yourself! I was reminded of a course I took in college, where they had several questions we could write papers on. I created my own question and wrote about that. It felt like I had accomplished more, and I remember the professor noted it was particularly impressive since it was a question I had created. The rewards of running your own business also includes being able to make changes without going through layers of management–you just do it! The most rewarding part is every month as a team we go through all the comments that patients have made after taking part in surveys. So many thank us for the opportunity, they love to share their voice, they feel they are making a difference helping others if not themselves.


What would you consider to be the greatest achievements of your business thus far?

Our greatest achievements have been growing our patient panel to 100,000+ patients and caregivers, covering over 700 diseases, completing more than 7,000 projects, and paying patients and caregivers over $9m. Along the way we have expanded to nine countries. And we’ve provided employment, both full-time and part-time, to dozens of wonderful people.


What advice would you give someone considering working in the rare disease space?

The rare disease space is a satisfying area to focus on. The need is so great–of the more than 7,000 known rare diseases, most don’t have treatments. In addition, often progress for rare disease patients helps patients with non-rare diseases as well. You really get to know the patients and their families in many of the disease areas, which is one advantage of their small size. There is a real sense of community.

Image of David Rose, on the left wearing a black shirt and khaki trousers, next to Pam Cusick wearing a black jacket and flowery shirt, next to Becky Pender wearing a black and white shirt, next to Wes Michael wearing a grey jacket over a  white shirt. All four are standing at a table in a conference setting, wearing conference lanyards.
David Rose and Becky Pender of Rare Revolution Magazine at the World Orphan Drug Congress USA 2022 with Wes Michael and Pam Cusick, Rare Patient Voice Senior Vice President.


What are your hopes for the future of your business?

We are looking forward to continuing our growth and welcoming more patients and caregivers across more diseases and conditions, in more countries, to join RPV. We are beginning to be able to offer patients the opportunity to take part in clinical trials, not just surveys, and it will be great to help more patients contribute to finding cures and treatments.


If you hadn’t founded Rare Patient Voice, what was Plan B?  What did your 10-year-old self want to be?

If I hadn’t founded Rare Patient Voice, I would most likely be working for another market research company. And struggling to find rare patients for my studies! When I was about 12, I started reading about presidents, and to this day I love to read biographies of presidents and other great (and not-so-great) men and women. I wanted to be President of the United States! But in a way I think I am helping people more by being president of Rare Patient Voice.

Logo read RARE PATIENT VOICE LLC in dark blue letters in a blue circle with an orange background fading out to the right. Underneath in white writing in a dark blue banner reads Also non-Rare!

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