Organisation

Cajuns for a Cure
City :
Phone :
+12706254066
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Event organised
United States

Cajuns for a Cure City: Phone : +12706254066

I was born with a very rare genetic disorder called Alagille Syndrome (ALGS). There are only about 8,000 cases of ALGS in the United States and only a couple of hospitals who treat it.

Throughout my life I have faced many challenges.

The symptoms of ALGS, constant medication and regular doctors visits. Constantly having to explain my disease to professors and classmates, which is often difficult and embarrassing. Stares from strangers and comments from people who are downright cruel.

It would be easy to dwell on the difficult parts of living with a rare disease but that's not the way my family and I live life.

My family and I became involved in the amazing nonprofit, the Alagille Syndrome Alliance, and participated in their Virtual Walk for a Better Life. This is how my family, with it's proud roots and extended family in the cajun country of Louisiana, became Cajuns for a Cure.

So in January of 2015, as Rare Disease Day drew closer, my sister and I discussed ways we could celebrate this day.

It was important to us that we do something uplifting, something to celebrate the positive impact left on the world by rare people and those who love them.

This is how we created Rare Acts of Kindness.

We created this campaign so ALGS warriors and others affected by rare disease all over the world could participate, make an impact in their local community, and know they're not alone.

I hope that these Rare Acts of Kindness will serve as a tribute to rare people just like me, as well as those people who support us through the roller coaster of a rare disease.


http://celestelaurent.com/celebrate-rare-disease-day-with-rareactsofkindness/
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