Connect with other RTD families
Cure RTD is a volunteer organization dedicated to saving lives through education, advances in treatment, and the search for a cure for Riboflavin Transporter Deficiency (RTD). www.curertd.org
Read Articles in the BVVL Patient Library
RTD International has a collection of published articles on RTD, BVVL and Fazio Londe under the Research Articles tab.
The Thisbe and Noah Scott Foundation (TNSF) was created by Laurian and John Scott after their 2 young children, Thisbe and Noah, died of BVVL/RTD. The mission of TNSF is to save lives by promoting research, awareness and support for children and families affected by pediatric neuromuscular diseases. www.thisbeandnoah.org
For BVVL genetic testing on C20orf54, please visit http://www.ncbi.nlm.nih.gov/sites/GeneTests/?db=GeneTests, under BVVLS, where the details of the lab and services they offer can be found.
For further information and instruction on the informal study of Riboflavin therapy, please contact one of the authors, Dr. Bosch, at the University of Amsterdam at firstname.lastname@example.org.
The Motor Neuron Center is the first initiative of the Columbia University Center for Neurosciences Initiative (CNI) in New York, dedicated to bringing researchers together to find the mechanisms responsible for pediatric and adult motor neuron diseases. www.columbiamnc.org
The Office of Rare Diseases (ORD) at the National Institutes of Health (NIH) provides information about rare diseases to health care professionals, patients and families, and helps to coordinate research.
The Genetic and Rare Diseases Information Center (GARD) provides information for the general public, including patients and their families, health care professionals and biomedical researchers. It was established by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD).
Laurian Scott wrote a children' book for Thisbe when she was sick entitled "Thisbe's Promise". This book tells the story of a little girl who is confined to her bedroom and how her mother takes her on adventures from inside her bedroom window. This book honors Thisbe and Noah and provides a resource for parents and children struggling for hope and promise in the midst of a profound illness. Please contact Lindsay Ballew at email@example.com for more information.
Genetic Alliance provides a comprehensive rare disease database and list of relevant associations/organizations for patients and their families, as well as advocacy tools to promote research for genetic diseases.