Living with Sjogren Larsson Syndrome
Sjögren-Larsson syndrome (SLS) is a rare genetic disease caused by mutations in the gene that encodes an enzyme called fatty aldehyde dehydrogenase. SLS smutation results in accumulation of fatty aldehydes (toxic chemicals) that are thought to cause severe ichthyosis (scaly, thickened, dry skin), neurological disorders (which may include spasticity, seizures, and cognitive delay), and, in some patients, retinal disease.
The National Organization for Rare Disorders (NORD), is a non-profit organization dedicated to helping people with rare diseases. Aldeyra and NORD are working to increase awareness of SLS and provide patients with opportunities to connect with each other and to access information about their disease and ongoing efforts related to diagnosis and treatment.
Through the collaboration with NORD’s RareLaunch® program, NORD provides mentorship, encourages knowledge sharing, promotes networking, and supports the growth of a strong-independent rare disease patient organization.
The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is the world's leading patient advocacy organization dedicated to improving lives and seeking cures for those affected with ichthyosis or a related skin type. FIRST educates, inspires and connects all affected individuals, their families, medical professionals and the general public with regard to these specific sets of skin disorders. FIRST is also the only patient advocacy organization funding research in the field of treatments and cures for ichthyosis.