Update Information for February 29, 2012 (V 2.26) The ‘Caregivers Info‘ page was updated to include more links as follows: The Caregiving Club – This website offers consulting services and educational content with a message to empower caregivers to prepare to care. Caring Connections – A national consumer and community engagement initiative to improve care […]
Update Information for January 31, 2012 (V 2.25) Information was added to the home page explaining that tissue samples of ECD lesions/tumors are being requested. Studies being conducted at the National Institutes of Health (NIH) and Texas Children’s Hospital need these samples as part of their research into the cause and possible treatments of ECD. […]
Last updated: July 10, 2015
rare connect
