Batten Disease Support and Research Association (BDSRA)
166 Humphries Drive
Toll-free: 800-448-4570 Telephone: 740-927-4298 Fax: 740-927-7683 E-mail: email@example.com Website: http://www.bdsra.org/
Hide and Seek Foundation for Lysosomal Storage Disease Research
4123 Lankershim Boulevard
Telephone: 818-762-8621 Fax: 818-762-2502 E-mail: firstname.lastname@example.org Website: http://www.hideandseek.org
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.