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
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.
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.
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,
March 14, 2014 - 3:33pmCaren
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