The patient advocacy groups that partner with the Rare Diseases Clinical Research Network are working hard to support rare disease patients and families during the COVID-19 pandemic. Collected here are several resources they have developed to support their patient and family communities. This post will be updated as new resources are added.
Through research, the BBDC is discovering new biomarkers of the disease that will lead to a deeper understanding of underlying pathophysiology of OI as well as assessing response to therapies
The American Partnership for Eosinophilic Disorders (APFED) is one of several Patient Advocacy Groups collaborating with the Consortium of Eosinophilic Gastrointestinal Disease Researchers to conduct research. APFED provides support in many ways, such as engaging the patient community, participating in committee work, and even pledging supplement funding to support future research.
An article published in Orphanet Journal of Rare Diseases shows the integral partnership between RDCRN investigators and the associated patient advocacy group members, as well as how this partnership has enhanced recruitment for protocols, study design, and consortium training programs.
The RDCRN social media presence aims to increase awareness of rare diseases, as well as assist with protocol accrual and registrations for the RDCRN Contact Registry.
The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium aims to advance therapeutic development through study of the relationship between clinical phenotype and underlying genotype, and also through the discovery and development of biomarkers.
TS Alliance serves as a two-way communication conduit representing the needs and priorities of individuals impacted by tuberous sclerosis complex (TSC) to the DSC and spreading awareness of research opportunities to the TSC community.
The new website features a streamlined layout of page content and navigation - making it easier for users to search for rare diseases studied under the RDCRN, find information about the RDCRN studies, search for patient advocacy groups associated with the RDCRN, and join the RDCRN Contact Registry.
The Autonomic Rare Disorders Clinical Research Consortium (known also as the Autonomic Disorders Consortium, ADC) investigators and associated patient advocacy groups (PAGs) joined forces in 2008 to establish a broad-based initiative to find better ways to identify rare autonomic diseases, elucidate fundamental mechanisms of their pathogenesis, and discover therapeutic strategies to treatment.