Barbara Handelin, PhD, is well versed in thinking outside of the box in rare. See what she has to say regarding her experience and the road ahead.
How many years have you worked in Rare?
Do you have a personal rare mission?
To realize the knowledge of rare diseases gleaned from the genome into life-changing medicine.
Do you work with any non-profit organizations?
BioPontis Alliance for RareDiseases.org
How did you become involved in the rare community?
I was trained as Ph.D., board-certified medical geneticist in 1987. I pursued research and then the application of research into genetic testing, gene therapy, other therapeutics for rare diseases. I also had a brother born with spina bifida.
Why does your/your organization’s mission matter?
We believe at Audacity that the pharma industry has learned to exploit the rarity of diseases to further maximize their profits. It seems wrong. We know we can make more therapies at sustainable pricing especially by utilizing the thousands of existing drugs and reconsidering, revisiting, repurposing and reformulating.
How does Audacity execute your mission in your community?
Through virtual drug development, involving patients in the knowledge base and design of how we pursue development.
What’s something people are always surprised to learn about regarding your organization?
That we are truly motivated by the fact that people with rare disorders are STILL waiting instead of by the impatience of investors or shareholders.
How can the rare community collaborate with your organization?
Bring us any drug development projects that involved reconsidered, revisited, repurposed or reformulated drugs – we are anxious to advance these projects.
What’s your hope for the future of the rare community?
That the rare community will be the driver of its own healing – through being invested in and part of and benefitting from their own knowledge. And that the rare community will work TOGETHER to share all knowledge, resources, and ideas to benefit everyone.