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Spectrum Health’s Rare Disease Day event to raise awareness & reduce stigma

Posted at 11:00 AM, Feb 25, 2019

Spectrum Health is excited to recognize Rare Disease Day, shining the light on many patients and families who are touched by rare diseases. On Thursday the hospital has a pretty cool program planned for patients and families with hopes of raising awareness.

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

The event will feature a panel discussion with patient families and physicians and more. Spectrum Health hope to raise awareness about rare diseases and help reduce any stigma associated with them.

The biggest challenges families face are the diagnosis, lack of awareness, need for more research, financial and insurance issues, and a sense of being "marginal."

Rare Disease Day will take place at Helen DeVos Children's Hospital Balk Cafe at 10 a.m.

The event will also be streamed live on the Helen DeVos Children’s Hospital Facebook page for those who cannot attend.

To RSVP, visit helendevoschildrens.org/genetics.