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Organizations Supporting this Disease
C/O Phyllis Kay Phillips
1704 Lower Millstone Lane
Salisbury, MD 21801
Social Networking Websites
- DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
- RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.
- Visit the Scleromyxedema group on Facebook.
- A Scleromyxedema Yahoo group is available as an online community for people with scleromyxedema.