News

NORD and SLS Community Launch Registry for Patients and Researchers


 

References

NORD and the Sjogren-Larsson Syndrome (SLS) Network Community have launched an SLS Registry to promote better understanding of the natural history of this rare syndrome and to advance research to improve the lives of patients. The registry is the third to be launched through a platform developed by NORD to serve rare disease patients and researchers. It creates a platform for SLS patients around the world to share information with researchers. For more information, see https://slsregistry.rarelaunch.org

Recommended Reading

Canada Adopts First-Ever Rare Disease Strategy
MDedge Dermatology
NIH Will Not Fund Gene-Editing Technologies in Human Embryos
MDedge Dermatology
Drug Approved for LAM Illustrates How Patient Organizations Can Partner With Researchers
MDedge Dermatology
EULAR: Updated scleroderma guidance focuses on new treatments, approaches
MDedge Dermatology
ACIP backs broader use of MenB vaccination to include adolescents and college students
MDedge Dermatology
Afamelanotide improves erythropoietic protoporphyria
MDedge Dermatology
Nonblanchable Violaceous Macules of the Periorbital Skin
MDedge Dermatology
Naloxone lotion improves disabling itch in CTCL
MDedge Dermatology
NORD Announces Rare Disease Research Funding Opportunities
MDedge Dermatology
Regular, outcomes-based treatment effective in vulvar lichen sclerosus
MDedge Dermatology