One of downtown Roanoke’s best-known buildings will stand out Friday night. Rare Disease Day, and the colors associated with it, also come at a time when funding to study rare illnesses is very much in question.
The Wells Fargo Tower will be lit up in pink, green, purple, and blue to mark the date - always the last day in February.
Rare diseases, by definition, impact less than one in two-thousand people. Meanwhile, there’s somewhere from seven to ten-thousand rare diseases that are known.
Michael Friedlander is Virginia Tech’s Vice President for health sciences and technology, and executive director of the Fralin Biomedical Research Institute.
He also sits on the Virginia Department of Health’s Rare Disease Council, which met this week. Among its chief concerns is future funding for the National Institutes of Health under the Trump Administration.
“Those research insights not only will often help the people with that particular rare disease, but often the discoveries from those will spill over and have an impact on other disorders as well, and related genetic disorders, whatever it might be," he said.
Friedlander said any one rare disease may be impacting several thousand people.
"So when you look at it from the perspective of private industry for example, like the pharmaceutical industry- and whether there’s profit to be made for some therapeutic that will only serve a small number of people – it’s already challenging," he explains.
He believes one of the ways to get around that as a country is to have agencies like the NIH, that has particular support for research on studying on rare diseases, or 'orphan diseases.'
Friedlander said there's a lot of waiting to see what courts decide regarding future NIH funding, but he says any substantial reduction will have a dramatic impact.
Rare Disease Day will shed light on some environmental conditions, including those that impact heart function, rare cancers and brain development, including developmental disabilities in children.
Friedlander says although each rare disease - is rare, the total of those impacted by them is about one in every ten Americans.
