Friday, April 26, 2013

Regional Director of Massachusetts

It is official I am the Regional Dicrtor of the Massachusetts Rare Disease Community chapter of the Rare Disease United Foundation.  We are a non-disease specific not-for-profit organization. Our mission is to build a strong rare disease community in Massachusetts, to provide support and information to our families, to raise awareness and to advocate for our families.

If you are interested in more information leave me a comment and I will get back to you.  At this time I do not have an email for the foundation set up because our website is under construction.

My favorite thing about being a part of this group is that we are non-disease specific.  There are so many organizations for specific disease while there are 100 of more diseases out there.  We all have the similar struggles, hopes and dreams and just because our disease are different doesn't mean we can't help each other.

We look forward to working on behalf the the rare disease community in Massachusetts. Thank you!!

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