The Children’s Inn at NIH Celebrates Rare Disease Day

The Children’s Inn at NIH in Bethesda celebrated Rare Disease Day on Thursday.

Because the holiday celebrates “rare” diseases, the holiday is ideally celebrated on the rarest day of the year, February 29. However, since this year wasn’t a leap year, it was celebrated on February 28.

Stephanie Feinberg, the family program assistant at The Children’s Inn, said that the holiday is very special to The Children’s Inn’s community. She said that by celebrating Rare Disease Day at The Children’s Inn, the children there feel less alone.

“There are over 7,000 rare diseases in the world, [and] it affects one out of every 10 people, so it’s not so much of a rare community,” Feinberg said.

Feinberg, herself, has a rare disease, which has made her passionate about “the rare disease community.” Five years ago she was diagnosed with a rare disease, after having a three-week long migraine.

“My eye went lazy — essentially I have two veins in my brain that didn’t form properly, so the spinal fluid isn’t able to drain out correctly so my brain reacts to it as though I have a brain tumor, even though physically there’s nothing present,” said Feinberg.

Understanding what it’s like to live with a rare disease makes it easier for Feinberg to empathize with the children staying at The Children’s Inn.

Photo Highlights from Rare Disease Day

These photos are courtesy of The Children’s Inn at NIH.

Social Media Highlights from Rare Disease Day

The Children’s Inn at NIH had many different activities Thursday to celebrate rare disease day. Here are some of the highlights from social media.

 

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Deirdre Byrne

About Deirdre Byrne

Deirdre Byrne is a social media coordinator for Montgomery Community Media. She can be reached at dbyrne@mymcmedia.org or on twitter at @DeirdreByrneMCM.

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