David: Jean Campbell is one of the Founding Mothers of rare disease patient advocacy and has been involved in the rare disease community for almost 30 years. Now the head of her own consulting firm, Jean shares with the Rare Collective® her insights, experiences and advice that has helped countless others in our community become more effective in serving patients and organizations. Jean, can you tell us how you stay involved with community even when you’re off the clock?
Jean: Because of my decades working with rare disease organizations, I have a huge network of colleagues and friends, many of whom ask for my advice on how to grow their patient organizations or make transitions within advocacy and industry. I also still get calls from my former “clients”—that is, patient advocates— at NORD (where I was VP of Membership Development) asking my counsel about a new hire or how to work with their board members. I always make time for these conversations, because I know how they affect people’s lives.
I stayed involved with many of the patient communities I worked with during my 18 years at NORD to keep up with their challenges and offer advice on anything from fundraising to organizational structure. Patient advocates who choose to work at pharmaceutical companies regularly contact me. For example, I recently explained to a young woman who wanted to get into this field what it’s really like and how to make the transition. Nine months later, she got a job as a patient advocate and told me, “you helped me realize that I can make this happen and do something I really care about for my career.” I will admit, this caused me to become a little teary-eyed.
I also experienced a similar situation with a rare-disease mom who wanted to prepare for an interview with a pharmaceutical company. I’d like to think that my advice helped her get the job.
I pride myself on giving honest advice, even when it’s not what the person wants to hear. A friend of mine ran an advocacy organization for her child’s rare disease, which grew to the point where she needed to make it her sole focus. That meant she needed a salary, but she was reluctant to give up her oversight responsibilities as a board member. I told her she couldn’t get paid and remain on the board, which she really didn’t want to hear. It was an emotional conversation, and I thought that I had lost her friendship. But, a year later, she told me that she took my advice and quit the board to become her organization’s Executive Director. I’m glad she came to that decision, because it let her best serve the organization while preserving the board’s rightful role of providing oversight.
Not all my stories have such happy endings. I recently talked to some parents who said they always protect their kids who have an ultra-rare disease from anything that could make it worse. As you would expect, they shared intense stories about how being so hyper vigilant about protecting their children can take over their lives. I tried to tell them that they need to preserve some time for themselves to stay healthy and sane, but they responded that I just don’t get it. It’s true — I’m not walking in their shoes. But I’ve seen too many parents burn out and even divorce because of the stress of caring for sick children. When this happens, I find myself working even harder to help them get some support.
You win some, and you lose some. I don’t presume my advice is changing the course of history, but I know that it has often been a good influence on patient organizations and pharmaceutical companies. Sometimes I just help things move a little faster, because the people I talk to can avoid spinning their wheels and clean up after their initial hiring or organizational decisions didn’t work out.
I’ve dedicated my life to patients with rare diseases. For me, this isn’t a branch of my business or a growing market segment I’m trying to tap. It’s been my whole life for almost 30 years, and I’m proud to spend every day helping the community in every way that I can.