Sometimes through tragedy and hard times, a beacon of hope can emerge.
After months of struggling with a rare aggressive disease, toddler Chloe Barnes passed away in 2008 in Minnesota. Inspired by the real struggles people with rare diseases face as far as finding proper diagnoses and treatment, the state of Minnesota has founded a rare disease advisory council — in honor of Chloe and her family.
Steps like this ensure that real change and progress can happen.
The Chloe Barnes Advisory Council on Rare Diseases was established by the University of Minnesota at the direction of the state legislature, and consists of professionals across the healthcare world including doctors, nurses, hospital administrators, researchers, and people who have a rare disease themselves.
The council is expected to have its first meeting by October 1st. And already it’s making an impact.
Karl Nelsen has ectodermal dysplasia, a disorder where the skin, hair, nails, teeth, sweat glands or mucous membranes develop abnormally. He said serving on the council is more for his daughter, who also has the disease, than it is for himself.
“It’s the sense of urgency of I need to find answers,” Karl said. “I’m hoping this is a think tank where we can bounce ideas off each other or issues off each other and get at least a first approach or strategy toward getting answers faster.”
Karl is excited to see how the discussions they have can translate into legislative recommendations and actual research that could improve outcomes for patients:
“We don’t want to have just meetings, we want to have results.”
The hope is that other state or big city governments follow suit and establish their own advisory councils; not only to serve those communities, but also to pool resources and data.
Erica Barnes, Chloe’s mom, said she hopes the council can help patients and families get access to a timely diagnosis, find some form of treatment for the disease and connect with physicians that can provide a care model.
“I think the main thing that we want to know as a patient, what I wanted to know as a mom, is that I am not an afterthought,” Erica said. “I want to know that somebody is problem solving.”
Does your state, city, or town support the rare disease community in a special way? Share your stories, thoughts, and hopes with the Patient Worthy community!