NORD Announces Four Patient Organizations to Join the IAMRARE Community and Submit Data to RDCA-DAP

Categorized in -

The Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP®) is an integrated database and analytics hub developed by Critical Path Institute (C-Path) and NORD through a collaborative grant from the U.S. Food and Drug Administration (FDA). Its goal is to aggregate and standardize data from rare disease patients, then put that data in the hands of researchers working to advance knowledge and treatments for rare diseases.

As part of this effort, four rare disease patient advocacy organizations have been awarded the opportunity to join the IAMRARE Program and, with education and support from NORD, will design and implement a natural history study. The data collected will then be included in RDCA-DAP.

NORD received many strong applications from qualified rare disease organizations in this round. The four organizations selected were prioritized based on their organizational capacity and readiness to begin quickly submitting their existing data to RDCA-DAP and taking advantage of this opportunity.

The four groups awarded include:


  • CureARS is dedicated to spreading awareness, connecting and providing support to affected families, and funding disease research for the 19 mitochondrial ARS (mt-aaRS) genes. CureARS seeks to unite the different research efforts on the individual disorders within the group of ARS genes and focus on the family of genes as a whole.


  • The mission of FamiliesSCN2A is to accelerate research, build community, and advocate to improve the lives of those affected by SCN2A-related disorders around the world. Rare and devastating, SCN2A-related disorders affect the entire family. The FamiliesSCN2A team of leaders strive every day and in every way to improve the lives of not only the patient, but the entire family.

National CMV Foundation 

  • The National CMV Foundation is a public nonprofit organization dedicated to educating families, healthcare providers, and people of childbearing age about congenital cytomegalovirus (cCMV). About 1 in 200 children are born with cCMV, putting them at serious risk for deafness, blindness, cerebral palsy, developmental disabilities, seizures, feeding disorders, behavior disorders, and even death. National CMV Foundation’s mission is to prevent pregnancy loss, childhood death, and disability due to cCMV.

Recurrent Respiratory Papillomatosis Foundation

  • The RRPF mission is to work to transform the lives of patients with recurrent respiratory papillomatosis (RRP) by advocating for a paradigm shift toward non-surgical options by catalyzing innovation through education, research, and collaboration in addition to promoting HPV prevention. They aim to improve care for RRP patients, advocate for a non-surgical paradigm shift, convene clinicians and researchers, catalyze new research, and strengthen the RRP community.

“These studies will allow RDCA-DAP to expand its reach into new and emerging rare disease areas and also supplement existing disease areas within the platform to enhance the potential for cross diseases analyses and learning. This foundational work is core to NORD’s mission of advancing research to ensure that every person living with a rare disease can achieve their best health and well-being,” said Pamela Gavin, Executive Vice President for NORD.

NORD’s IAMRARE Program provides the support and tools to patient advocacy organizations to collect patient-reported data. For more information, visit:

RDCA-DAP welcomes inquiries from groups who are interested in data sharing and want to learn more. For more information about RDCA-DAP, please visit: