Rare Disease Day: Families shed light on struggles with rare disease

Each year, on the last day of February millions of families battling different rare diseases come together to raise awareness.

And the hope is to also raise more money for research.

Separately, these diseases don't affect a huge number of people so it's difficult to get funding for research.

There have been efforts to change that with new laws, but in the meantime, families have been taking matters into their hands.

Tammy Nearon says her daughter Taylor was 17 when she was diagnosed with Mast Cell Activation Disorder.

"Her body was in a constant state of allergy," she said.

Taylor was in and out of the hospital, on heavy steroids, but like with many rare diseases, there wasn't a lot of research.

It's why many families start doing their own fundraising, like an annual superhero run that Taylor started.

Nicole Henwood organized an ax-throwing event, symbolically hoping to ax out what's known as NF2, the rare disease her 7-year-old son A-J is battling.

In the video above, 6abc's Ali Gorman speaks with some of these families spearheading local efforts for awareness of rare diseases.

To read more about Rare Disease Day, click here.

Follow us on YouTube
Send a News Tip to Action News
Learn More About 6abc Apps
Copyright © 2019 WPVI-TV. All Rights Reserved.