About the Coalition of Patient Advocacy Groups (CPAG)
An important feature of the RDCRN network is the direct involvement of patient advocacy groups (PAGs), also know as patient advocacy organizations, in network operations, activities, and strategy.
Each rare disease research group (consortium) in the RDCRN network includes relevant PAGs in their consortium membership and activities. These PAG representatives advise the researchers within their consortium by joining network-level discussions and meetings. The RDCRN patient advocacy groups collectively represent the perspective and interests of patients with rare diseases.
As the patient advocacy arm of the RDCRN, the Coalition of Patient Advocacy Groups (CPAG) and its members use their position to advance the cause of rare diseases research and improve patient outcomes. The CPAG Steering Committee meets throughout the year to help facilitate the development of activities that will benefit the entire CPAG membership. Those activities include (but are not limited to) webinars, in-person meetings, and one-on-one connections with other CPAG members and RDCRN researchers.
To make faster progress toward new treatment options and cures that can improve the lives of those affected by rare diseases.
As the patient advocacy arm of the Rare Diseases Clinical Research Network, the Coalition of Patient Advocacy Groups (CPAG) members will work to advance the cause of rare disease research and improved patient outcomes through the network. The CPAG promotes collaboration between rare disease advocacy organizations and the Rare Diseases Clinical Research Network to improve access to—and benefit earlier from—research conducted on rare diseases.
Patient Advocate Spotlight: Kristen Hutchinson Spytek Accelerates Awareness and Research in Congenital Cytomegalovirus
Kristen Hutchinson Spytek is the president and co-founder of the National CMV Foundation, a patient advocacy group that aims to prevent pregnancy loss, childhood death, and disability due to congenital cytomegalovirus (CMV). The most common prenatal infection in the United States, congenital CMV is a herpes viral infection that results in a range of symptoms from symptomless to severely impacting the central nervous system, spleen, and liver. Here, Kristen shares her journey to rare disease advocacy, impactful work by the National CMV Foundation, and collaboration with the Congenital and Perinatal Infections Consortium (CPIC).
Patient Advocate Spotlight: Erica Barnes Fights for Children with Metachromatic Leukodystrophy and Other Rare Diseases
Erica Barnes, MS, CCC-SLP, is the co-founder of Chloe’s Fight Rare Disease Foundation (CFRDF), a patient advocacy group that supports research to find and implement effective cures and treatments for rare childhood genetic diseases. She also serves as a board member of Cure MLD, state ambassador of the Minnesota RareAction Network, and advocacy committee chair of the Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN). Here, she shares her journey to rare disease advocacy, impactful work by CFRDF, and collaboration with GLIA-CTN.
Patient Advocate Spotlight: Kristin Anthony Brings Expertise in PTEN Hamartoma Tumor Syndrome Advocacy to New Role as Chair of RDCRN Patient Groups
Kristin Anthony is president and founder of the PTEN Hamartoma Tumor Syndrome Foundation, a patient advocacy group of the Developmental Synaptopathies Consortium (DSC) that aims to find treatments or a cure for PTEN hamartoma tumor syndrome (PHTS). She is also the new chair of the Rare Diseases Clinical Research Network (RDCRN)’s Coalition of Patient Advocacy Groups (CPAG). Here, she shares her start in rare disease advocacy, exciting work with the PTEN Foundation and DSC, and goals as the CPAG chair.