Aldeyra Therapeutics, National Organization for Rare Disorders collaborate
Aldeyra Therapeutics, a Massachusetts-based biotechnology company focused on the development of products to treat diseases related to free aldehydes, is collaborating with the National Organization for Rare Disorders (NORD), a U.S. nonprofit organization dedicated to helping people with rare diseases.
Aldeyra and NORD will work to increase awareness of Sjögren-Larsson syndrome (SLS) and provide patients with opportunities to connect with each other and to access information about their disease, available resources and ongoing efforts related to diagnosis and treatment.
SLS is an orphan disease characterized by severely dry skin, retinal dysfunction, mental delay and spasticity. NORD will develop a multi-phased approach to enhance the ability of the SLS population to communicate and receive optimal care through development of a patient contact registry and other tools, such as social media. This will be conducted through RareLaunch, NORD's capacity-building and mentor program, through which it works with rare disease patients to develop or evolve disease-specific communities for the purpose of sharing information, accessing resources and learning from medical experts.
Todd C. Brady, M.D., Ph.D., president and CEO of Aldeyra, said, "NORD has been a leading voice for people suffering from rare disorders for over 30 years, helping to bring attention to patient populations that often are overlooked and have severe, unmet medical needs. This collaboration provides the opportunity to bridge a gap in awareness of Sjögren-Larsson syndrome and will further our continued efforts to facilitate a more connected patient community and better educate physicians who could have patients with this condition."
Brady continued, "With Aldeyra's lead product candidate, NS2, approaching clinical testing, we believe there is an opportunity for significant advancement in how these patients are treated.”