Rare Diseases Join this Group

Rare Disease Day

By cbegun Blogger February 25, 2014 - 3:09pm

What are you doing to help spread the word about rare diseases on Friday, February 28?
Visit the Rare Disease Day website to learn of events happening worldwide.
www.rarediseaseday.org

By cbegun Blogger March 14, 2014 - 3:33pm

Hi Susan,

I don't have a rare disease but do know a number of people with varying types rare conditions including Hypophosphatasia (HPP), Myelofibrosis (bone cancer), Progeria (aging disease) and Rapp-Hodgkin syndrome (genetic multi-system disorder), just to name a few.

My job in health care public relations has exposed me to a number of people with diseases that I have never heard of. Patients, parents and caregivers are desperate for information or support available so however I can put tips or patient experiences out there then I feel I am doing my part to help others in need.

Thanks for joining this group.

Best,
Caren

March 14, 2014 - 3:33pm

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Group Info

Group Leader

cbegun

Description

There are so many diseases that don't have enough information, resources or support especially those that are rare conditions. This group, I hope, provides a place where women can start to find the information they are seeking with others looking to share experiences, and insights. This is a more targeted location for rare diseases specifically.