For those living with a rare disease or complex medical condition, finding resources, support, or an educated healthcare professional in their specific area can be a challenge.

Cranston resident Nicole White is the Executive Director of a nonprofit called Rare New England, whose mission is just that. Otherwise known as RNE, Rare New England is hosting a Comedy Show fundraising event to further its mission of bringing together New England patients, families and providers, touched by a rare disease. Rare New England offers educational opportunities, creates awareness of available resources and builds foundations for support to improve patient quality of life.

The comedy show will be hosted by Funny4Funds at the Comedy Park in Cranston on June 17th. Doors will open at 6:00pm and the show will start at 7:00pm.

White has been involved in nonprofit work since 2016. Her passion in this area grew as her son Kyrie was born with a rare birth defect called Gastroschisis, when the abdominal wall fails to fully close during development, leaving the intestines to develop on the outside of the body. From this, Kyrie was given the diagnosis of a life long rare disease called Short Bowel Syndrome due to losing the majority of his small intestine at 6 days old.

White’s son has his health challenges, as does her husband. “The road we’ve been on has been quite the challenge, but we wouldn’t change a thing. It has made us who we are and has brought so many special people in our lives.”

White became great friends with Cranston’s own, Meri Kennedy, as she had similar health challenges her husband faced. “The internet is so powerful” says White. “Meri and I met in a disease specific group on Facebook, discovered we were both from Cranston, and were there for each other since. She became a great friend.” “Meri would call me when she needed support, assistance with a line dressing (for her IV) when she couldn’t get her nurse, or her hair done when ‘Salon Steve’ wasn’t able so we could also have our ‘girl talk’.” said White.

“I do this work to help individuals like Meri; to provide resources and support to patients and families as well as education to medical providers so they can recognize a rare disease and know how to treat the patient.” This is why it’s so important to support a great cause like Rare New England.

Did you know rare diseases impact more people than cancer and AIDS combined? These people live in our neighborhoods and need our help. 1 in 10 people are affected by a rare disease and half of them are children. 3 in 10 children with a rare disease won't live to see their fifth birthday. There are no cures and just 5% of rare diseases have an FDA approved treatment.

The rare disease community tends to be a community in the background because not many people are familiar nor is it talked about much. Rare New England welcomes the community to attend and share a laugh together at their comedy show fundraiser. “This fundraiser is means to support our mission and share about the rare disease community. It will be a great way for the community to show support to a special community and make an impact to lives. Who knows, it could even be a neighbor you’d be helping support.