Rare diseases affect only 6% of the world's population, but its impact to those who have it is huge.
Rare Disease Day is Sunday, Feb. 28, and it takes on new meaning this year during the pandemic. For 74-year-old John Wagner his slow gait isn't the result of age but a rare disease.
"When you get diagnosed with ALS what goes through your mind?" I asked him.
"Panic, absolute utter panic," he said.
Diagnosed in 2016, the Slatington man is one of 30,000 Americans who have the neuro-muscular disease.
"People with ALS are at an increased risk for COVID-19," said Dr. Alissa Romano, making treating it and conducting clinical trials difficult during a pandemic.
Romano, who is the Co-Director of the ALS clinic at the Lehigh Valley Health Network, also says COVID has also overshadowed many rare diseases that have a hard enough time finding the medical spotlight.
"I hope there is no long-term impact but the short-term impact is yes, funding has been hit," she said.
The funding had gotten a big boost starting in 2014. The ice bucket challenge raised $220 million worldwide for ALS, money that's funded new research studies and helped develop technologies like telehealth.
"Been a godsend to them, to be at home safe and still do a robust visit," she said.
A cure has yet to be found, but for those like Wagner pre-pandemic in-person treatment is still the best medicine.
"A lot of it is feeling joints, moving limbs, seeing how much resistance you can generate," Wagner said.