Dr. Tammie Dewan – Vice Chair
I came to know children with rare diseases as the medical director of the Complex Care Program at BC Children’s Hospital. This program was developed to provide dedicated care for children with the most complex medical needs at BCCH, regardless of diagnosis. More than half of the patients have either rare or undiagnosed conditions. This has led me to an awareness and appreciation for the struggles of families in the face of unknown conditions and trajectories. I am honoured to be affiliated with the RDF as a board member.
Isabel Jordan – Chair
I’m the mother of two; my oldest has been diagnosed with a ultra-rare or unique disorder. I’ve always done a lot of volunteer work at a variety of non-profit groups. I’ve worked as a freelance writer and as an environmental educator. My journey has brought me to being one of the founding members of the Rare Disease Foundation and now I am the Board Chair as well as an avid member of Vancouver Parent 2 Parent Resource Network. I know that together as a community we can make a large impact. Together we can support one another and make the changes necessary to see better treatment and research into rare diseases. This is what keeps me working on this every day. Well at least on the days when I’m not off playing with the kids. Or skiing.
Tyler Jordan – Treasurer
I am one of the co-founders of the Rare Disease Foundation. I’m a board member, the Treasurer, and I sit on the Research Committee.
I have two children; my eldest has been diagnosed with an ultra-rare or unique disorder. I was formerly the President & CEO of Arc’teryx Equipment, a Vancouver company that employs 500 people. I received my undergraduate science degree at Queen’s University in 1992.
Dr. Bill McKellin
I am the father of twins, one of whom has a rare form of dwarfism. I am a founding board member of the Rare Disease Foundation. I am also a medical anthropologist at UBC and interested in the ways that people (parents and clinicians) interpret medical information.
Dr. Millan Patel – Research Director
I am a clinical assistant professor in the Department of Medical Genetics at the University of British Columbia. I have research experience in Drosophila, mouse and human genetics; my current research focuses on Adams-Oliver syndrome and a virus hunting project in preterm birth and certain birth defects. I am a co-founder and Research Director for the Rare Disease Foundation. I love teaching, thinking of ways to make complex systems more efficient, playing squash and contributing to the growth of this amazing Foundation.
Owen Underhill – Secretary
I am the father of a 14-year old daughter, Alynne, who has 5p- syndrome. 5p- or cri-du-chat is a chromosomal deletion syndrome. Alynne is a delightful child who is non-verbal and non-ambulatory. My wife Wanda and I have two other children, Adrian aged 25 and Sophia aged 22. The experience of raising Alynne has brought us into contact with many new people, and many new organizations. I am pleased to be a Board member of such an innovative and proactive organization as the Rare Disease Foundation. Our goal is to expand our network and be of help to parents and individuals with rare diseases in a variety of ways. In addition to my life with Alynne and Rare Disease Foundation, I am a composer/conductor who teaches at Simon Fraser University in the School for the Contemporary Arts.
I am a recent graduate from UBC’s Integrated Sciences program and have been volunteering with for the Rare Disease Foundation for a few years now. I help maintain some operations aspects of the organization and manage the organization’s technological implementations. Although I am not directly affected by a rare disease, I am pursuing a career in healthcare and hope that this experience can lend the me skills to better the treatment of rare diseases for the future.
I am intimately familiar with the experience of living with a rare disease as both my son and I have Ehlers-Danlos syndrome, a rare genetic connective tissue disorder. My desire to increase awareness and visibility of rare diseases led me to the Rare Disease Foundation. I am honoured to be a board member of this innovative foundation. I am involved in volunteer and donor engagement and fundraising events. With a background in nursing, I am currently a clinical counsellor working with adults with chronic health conditions. I am a passionate advocate, love swimming and hope to soon earn my motorcycle license.
A passionate father of two children; my oldest having ATR-X (alpha thalassemia x-linked intellectual disability syndrome). I’ve been actively engaged with the Toronto Parent-2-Parent support group since day one and the parent lead since September 2015. I strongly believe in needing to raise our collective voice so that rare diseases get the attention they need and haven’t shied away from speaking publicly whenever the chance has presented itself. As a board member, I welcome the opportunity to lend my voice to our collective goal while strengthening and unifying our voice across Canada.
James Radke has been involved in the rare disease community ever since his daughter was born – 19 years ago. Soon after her birth, a diagnosis of craniosynostosis led Jim to change his career path from one of research to one of medical communications to allow for more work flexibility during those early years. Today, his daughter is a healthy young woman and those years of medical communications and rare diseases eventually led Jim to form two companies focused on rare conditions. The first company was Rare Disease Report, a U.S.-based website geared towards educating doctors about the latest developments in rare disease research. The second company is Zeal Access, a Canadian-based company focused on helping patient advocacy groups communicate their information to their intended audience. During his 6 year tenure in both companies, Jim travelled the world and met thousands of rare disease advocates, patients, researchers, and caregivers. And each one had a unique story to tell that continues to inspire him to advocate for any person pursuing better ways to manage people with a rare disease.
Scientific Advisory Council
- Dr. Cornelius Boerkoel Chair
- Dr. Barb McGillivray
- Dr. David E.C. Cole
- Jennifer Thompson
- Dr. Kerstin Mueller
Rare Finds Event Chairs
- Alana Newton – Vancouver
- Louise Berezowsky – Edmonton