TIP of the WEEK: We Are Rare

February 27, 2015

This weekend we celebrate International Rare Disease Day. One day of the year that the spotlight is on those that live with diseases so rare that, in some cases, very little is known about them. But what about the other 364 days of the year? Who is watching, learning, studying, worrying and loving those living with rare diseases? We are. The families, staff, and educators who commit and dedicate our lives to the rare and beautiful people in our lives.

So this Saturday don’t simply celebrate the people in your life living with a rare disease, celebrate yourselves and those equally rare people who support you and your child. Reach out to families who have less support or who are currently in crisis. Educate everyone every chance you get. Look back on the past year and rejoice in the successes, no matter how small, because every step forward is a huge achievement. The world celebrates rare diseases on Saturday 2/28 but for us every day is rare disease day and we wouldn’t have it any other way.

Patrice Carroll
Manager of PWS Services