Rare Leader: Isabel Jordan, Chair, Rare Disease Foundation

The Basics
Name: Isabel Jordan

Title: Chair

Organization: Rare Disease Foundation

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Disease focus:  The Rare Disease Foundation is focused on linking basic science and clinical practice to increase the efficiency of rare disease research. This model is called “translational care.” This model drives patient based, treatment-focused research projects from disease characterization to treatment with greater efficiency. By incorporating research, astute clinician observation, and patient and family knowledge into the various stages of rare disease research we impact the speed of discovery and the way rare conditions are managed.

Headquarters: Vancouver, British Columbia, Canada

How did you become involved in rare disease: Like a lot of people, our son started on a diagnostic odyssey when he was one-and-a-half-years old. Eventually, when he was four-and-a-half-years old, Zach  landed at a medical geneticist’s office. We were told something genetic was happening, but it didn’t fit into any known diagnosis. We were told to watch and try to be proactive. It left me feeling very lost at sea. When he was six, we found a large very rare tumor in his jaw. We weren’t a part of any disease community and there was nobody to help us navigate the system as he went through the surgery and recovery. As he recovered from that we developed a connection with his medical geneticist who was wonderful. We had been talking to him about the need to do something for the rare disease community. He invited us to join him and a group of parents and clinicians that had connected in the hopes to create something that could help rare disease patients. We joined them and eventually the Rare Disease Foundation was born.

Previous career: Currently works with clinical researchers on patient engagement

Education: Honors B.S. in biology from Queens University in Kingston, Ontario

The Organization
Organization’s mission: Connecting and serving communities of patients, caregivers, healthcare providers, researchers, and supporters to transform the lives of those living with rare disease.

Organization’s strategy: Our strategy is to link those communities either virtually or in person in order to fulfill that mission.

Funding strategy: We’re trying, especially with big funders, to unlock funding from donors who are frustrated by the slower pace of research from bigger charities and big research projects. We’re a lot about creating small projects that make big change. We’re trying to unlock funding from people that are frustrated about how things have always been done.

What’s changing at your organization in the next year: We just went through a strategic planning process and we’re taking quite a bigger awareness and engagement focus. We’re partnering with Outrun Rare, which was an independent fundraiser. We officially brought them into our organization recently and we’re leveraging their community to bring the message of rare disease and the inequities facing the rare disease community to the Canadian community at large. It’s amplifying our message and putting it to a group of people who aren’t necessarily affected by rare disease and having them learn about the inequities faced by our community.

Management Style
Management philosophy: I’ve always worked independently as a contractor, as a freelance writer. I’ve never actually held, other than as a teenager, a job where I was employed by anybody. So, I think that my style is really born out of partnership. I believe in equity and in listening to people. Our board works primarily on consensus. We have a lot of effective people on our board and in our organization who have quite different backgrounds and points of view. Our organization started very deliberately as a group of researchers, clinicians, and parents, as well as adults with rare disease, all of whom bring different perspectives on the problems that arise. We work on the basis that everybody’s different perspectives bring real value and need to be respected.

Guiding principles for running an effective organization: I know I don’t have all or many of the answers. Knowing to listen to people with the right information and the passion for making things better for folks with rare disease gets us where we want to go.

Best way to keep your organization relevant: It’s knowing as board member that this group of people that’s relatively small are not the ones that have the answers. We’re not the voice of rare disease. What we have to do is be guided by the rare disease community. We have to seek out what the rare disease community wants and needs and then be guided by that. Of course, that’s tempered by what our capabilities are, what we’re able to implement—it becomes a conversation in what we can make happen.

Why people like working with you: I hope I’m kind. I hope I’m funny. I hope I’m respectful.

Mentor: My husband Tyler Jordan is my mentor. He has the respect of his colleagues and staff and in business. I look to him to see what a leader looks like. In the rare disease world, I have a good friend, Gabrielle Peters. She reminds me that my experience is only my experience. I can’t use that as a touchstone for what other people are going through and what other people need. I need to be inclusive of voices that are rarely included. And I have to very deliberately reach out for that if we want to stay relevant. My fellow patient advocate and writer friend Sue Robins, she’s my mentor in kindness. I can be a little rough around the edge. She helps me remember to be kinder.

On the Job
What inspires you: My family and my community. That’s all I need.

What makes you hopeful: When we first started as a foundation, before we even had our charitable status, students at UBC (a local university in Vancouver) threw a skating fundraiser for us. The evening of the event, we walked into this big arena, and there were all these young adults putting in all this work to make it a success to raise funds and awareness for our community. As a mom of a kid who is affected by a rare disease and the leader of this new organization, I found it so incredibly moving that all these people who were not personally touched by rare disease took time out of their lives to try to make our lives better. That’s amazing. When those who have no direct connection to rare disease or disability stop and really listen—when they expand their world view to include us—that is mind-blowing to me.

Best organization decision: To take the leap and hire staff for full time.

Hardest lesson learned: I’m still learning that one. To protect my time and myself a little bit. I have a tough time with boundaries that way. This is supposed to be a volunteer thing. I’m obviously passionate about the Rare Disease Foundation and that makes it hard to say ‘no’ when I should probably let somebody else take something on. I’m getting better at that, but it’s still tough sometimes.

Toughest organization decision: It continues to be difficult to decide where to put our funds. We ran so lean for so long—we put all of our funds into programs but came to realize that we needed infrastructure if we weren’t going to burn out. But it remains difficult to know when to allocate funds to build infrastructure to support the organization versus to keep funds in our programs.

Biggest missed opportunity: It’s important for people to try to understand their internal bias. Because we started with parents of rare disease kids within a pediatric institution, we were very much pediatric focused for a long time. It took us a while to realize that we didn’t have enough of a lens on the issues of adults with rare disease. We’re trying to change that now and be more inclusive of the adult rare disease community. We’re learning as we go just how large our community is.

Like best about the job: I love connecting with other people in the community. It makes me feel so much less alone then when we started on our diagnostic journey with our son. As well, it makes me feel like perhaps I can help others avoid that rowboat-in-the-middle-of-the-ocean feeling.

Like least about the job: Emails, emails, emails.

Pet peeve: Trying to organize meetings across time zones.

First choice for a new career: I’ve been working with researchers and public speaking about rare disease and patient partnerships. I enjoy that.

Personal Taste
Most influential book: I enjoy speculative fiction because it’s about possibilities and what happens at the limits of society.

Favorite movie: The Princess Bride

Favorite music: I listen to everything from opera to jazz to musical theater to punk.

Favorite food: I love food – especially food I’m not making myself and not cleaning up after.

Guilty pleasure: iPhone games, but I don’t feel guilty.

Favorite way to spend free time: On the water.