It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here.
Mary Elizabeth Parker
Advocate | Undiagnosed Community
About Mary:
- Austin, Texas
- Medical Liaison at U.R. Our Hope
- Contact info: Website | Email | Twitter | Facebook | Linked-In
- Passionate about: Patient Support
Why did you become an advocate for your rare disease community? What was happening in that community that made you want to take action?
I had a patient, Ethan, who died undiagnosed, but two days after his passing was diagnosed with Krabbe. Krabbe can be treated if detected early. I took my anger and turned it into passion for helping those with undiagnosed and rare disorders.
What was your first success or defining moment as a rare disease advocate?
Helping a family get into the NIH Undiagnosed Disease Program.
Share some of your biggest accomplishments as a rare advocate?
Helping individuals and families get to the physicians and researchers who can assist on the diagnostic journey. I love making the connections, and navigating the medical system.
Share some of the hard realities you faced advocating for your rare disease.
Losing someone without an answer…or a viable treatment.
What project(s) are you working on now for your community?
U.R. Our Hope’s biggest focus now is getting the undiagnosed into a variety of studies to help them find their answers. We are working with entities all over the United States and one abroad.
What advice would you give to an advocate just starting out?
Partner…partner…partner…we cannot do this alone!
Why do you find working with advocates from different disease groups beneficial?
We learn, share, and move forward together.
