My Nonprofit Reviews
Gretchen
153 profile views
1 reviews
Review for Loeys-Dietz Syndrome Foundation, Baltimore, MD, USA
This organization is making great strides in raising awareness and community for those impacted by Loeys-Dietz syndrome. They truly are passionate about helping individuals get correct diagnoses, accurate medical management and researching better treatments for those with the disorder. Members are always willing to share stories and provide support for those who are new to the LDS diagnosis.
More Feedback
I've personally experienced the results of this organization in...
their willingness to answer questions about LDS and to educate others in the genetics field through outreach.
If I had to make changes to this organization, I would...
raise additional funds so that it would not be completely run by volunteers.
Role: Board Member & I have been in contact with many families with LDS through the organization.
