CAMBRIDGE, Mass.--(BUSINESS WIRE)--Cydan Development, Inc., an orphan drug accelerator dedicated to creating therapies that impact the lives of people living with rare genetic diseases, today marked its support of Rare Disease Day with a gift to the National Organization of Rare Disorders (NORD) to support its Natural History Study Project being developed in collaboration with the U.S. Food and Drug Administration.
“There are 7,000 rare diseases that, combined, affect nearly 1 in 10 Americans—most of whom are children,” said NORD President and CEO Peter L. Saltonstall. “Rare diseases can be devastating and lifelong and we are grateful for Cydan’s support, which will enable us to expand this important research program and support our mission of helping people and families affected by rare diseases.”
“We are proud to support NORD’s effort to develop natural histories for many rare diseases, a program that will provide researchers with disease-specific data that can accelerate pre-clinical and clinical development of new therapeutics,” said Chris Adams, Ph.D., Co-Founder and Chief Executive Officer at Cydan. “Rare diseases affect approximately 30 million Americans, and it’s heartening to see more resources dedicated to the development of orphan drug therapies.”
NORD announced its Natural History Study Project in December to collect data to help medical researchers better understand how specific rare diseases develop and progress over time. An FDA grant funded a one-year cooperative agreement that builds upon the Natural History Study Project in NORD’s Registry Platform. NORD will work with patient groups and the FDA to develop a registry toolkit containing best-practice tools and templates that will aid future organizations to initiate and conduct natural history studies designed to fill research gaps and support drug development programs.
Cydan’s New Website
Cydan also launched its new website www.cydanco.com to describe how it creates new orphan drug therapies and highlights its collaboration with patient advocacy groups, scientific researchers and industry to achieve this goal. Site visitors can access information on events and fundraisers hosted by local and national patient advocacy groups as well as learn more about Cydan’s vision, strategy and outreach efforts.
“We hope our new site will help explain our process to identify new programs and further accelerate our work developing rare disease therapies as well as provide a resource to advocacy groups which support patients and families living with orphan diseases,” said James McArthur, PhD, Cydan Co-Founder and Chief Scientific Officer.
Rare Disease Day®
Rare Disease Day® is an annual awareness day celebrated worldwide. This day is dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and their families. Rare Disease Day takes place every year on the last day of February to underscore the scientific, medical and social issues that affect this population. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations.
Rare Disease Day is sponsored by the National Organization for Rare Disorders® (NORD®), a leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases. The Massachusetts event today is co-hosted by MassBio and VHL Alliance. MassBio is an association of more than 650 biotechnology companies, universities, academic institutions and others dedicated to advancing cutting edge research. VHL Alliance is dedicated to research, education and support to improve diagnosis, treatment and quality of life for those affected by von Hippel-Lindau, a genetic form of cancer.
About Cydan Development, Inc.
Cydan is an orphan drug accelerator dedicated to creating therapies that impact the lives of people living with rare genetic diseases. Cydan evaluates products for treating such diseases with high unmet medical need with the goal to start companies to develop promising therapies. Cydan’s first new company, Vtesse, was launched in January 2015 and is developing drugs for NiemannPick Disease Type C (NPC) and other rare, severe diseases with great unmet need. Cydan was founded in 2013 by a management team with extensive drug discovery, clinical development and business development experience and financed by leading life sciences investors NEA, Pfizer Venture Investments, Lundbeckfond Ventures, Bay City Capital and Alexandria Venture Investments. The accelerator is based in Tech Square in Cambridge, Mass.