Sanford Research – Coordination of Rare Diseases Sanford Research is committed to finding cures and advancing therapies for rare diseases. Through the CoRDS program you can help advance this mission. Patients who participant are helping researchers at Sanford and around the nation find answers about rare diseases.
By enrolling in CoRDS, patients who qualify will be notified of any opportunities to participate in clinical trials and other research opportunities. Please take the time to open this link to register your rare disease.
Pcori Patient-Centered Outcomes Research Institute (PCORI) helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community.
The Rare Diseases Clinical Research Network (RDCRN) is made up of distinctive consortia that are working in concert to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community. The RDCRN also aims to provide up-to-date information for patients and to assist in connecting patients with advocacy groups, expert doctors, and clinical research opportunities”.
PubMed may offer only partial research results in preliminary findings. However, we are very fortunate that the disease has been studied by some of the top researchers in the field.
Orphanet Journal of Rare Diseases is an open access, online journal that encompasses all aspects of rare diseases and orphan drugs. The journal publishes high quality reviews on specific rare diseases. In addition, the journal may consider articles on clinical trial outcome reports, either positive or negative, and articles on public health issues in the field of rare diseases and orphan drugs.
The US National Library of Medicine has a search engine for your convenience, to look for medical articles free of charge.