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Rare Disease Day at NIH
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Meeting/ Workshop
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FDA
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NCATS, NCI, NHLBI, NIAAA, NINDS
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Rare Disease Day; takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients; lives. Each year, the National Center for Advancing Translational Sciences (NCATS) and the National Institutes of Health (NIH) Clinical Center sponsor Rare Disease Day at NIH as part of this global observance. Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments. The goals of Rare Disease Day at NIH are to: demonstrate the NIH commitment to helping people with rare diseases through research; highlight NIH-supported rare diseases research and the development of diagnostics and treatments; initiate a mutually beneficial dialogue among the rare disease community; exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts; shine a spotlight on stories told by people living with a rare disease, their families, and their communities.
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Rare Diseases Registry Program (RaDaR)
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Resource Development
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FDA
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NCATS
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NCATS launched the Rare Diseases Registry Program (RaDaR) website to provide the rare diseases community with easily accessible guidance on how to set up and maintain high-quality registries that are based on best practices and data standards. The goal is to enable rare diseases patient organizations to better promote and support patient-focused research and the collection of patient data that can be used in developing treatments for rare diseases.
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Recognize, Assist, Include, Support and Engage (RAISE) Family Caregiving Advisory Council
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Committee, Work group, Advisory group, or Task Force
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ACL, ACF, ASPE, CDC, CMS, FDA, HRSA, IHS, OASH, SAMHSA
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NIA
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Federal and non-federal advisory council is charged with providing recommendations to the Secretary of Health and Human Services on effective models of both family caregiving and support to family caregivers, as well as improving coordination across federal government programs, as mandated by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017.
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Recovery Month
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Public Education Campaign
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SAMHSA
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NIDA
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The Substance Abuse and Mental Health Services Administration (SAMHSA) holds an annual public health observance for people in recovery from substance abuse. The National Institute on Drug Abuse (NIDA) is part of SAMHSA's inter-agency planning committee and a promotional partner.
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Red Ribbon Week
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Public Education Campaign
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Not Reported
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NIDA
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Drug use prevention campaign.
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Regenerative Medicine Innovation Project (RMIP)
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Committee, Work group, Advisory group, or Task Force
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Not Reported
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NIA, NIAMS
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NIAMS assumed the lead IC role in the Regenerative Medicine Innovation Project (RMIP) in 2023. The RMIP was established by the 21st Century Cures Act to accelerate progress in the field by supporting clinical research on adult stem cells, while promoting scientific rigor and protecting patient safety. This initiative is a trans-NIH effort, in coordination with the Food and Drug Administration (FDA).
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Regenerative Medicine Innovation Project (RMIP) Senior Oversight Committee
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Committee, Work group, Advisory group, or Task Force
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FDA, HRSA
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NCATS, NEI, NHLBI, NIA, NIAID, NIAMS, NIDCD, NIDCR, NIDDK, NINDS
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The Regenerative Medicine Innovation Project was established by the 21st Century Cures Act to accelerate progress in the field by supporting clinical research on adult stem cells, while promoting scientific rigor and protecting patient safety. This initiative is a trans-NIH effort, in coordination with the Food and Drug Administration (FDA).
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Registry-based studies of hematologic malignancy incidence and survivorship
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Research Initiative
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FDA
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NCI
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NCI and FDA investigators are collaborating to utilize registry-based data to describe incidence trends of hematologic malignancies as well as second cancer risk and mortality patterns among hematologic malignancy survivors.
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Regulatory landscape of the human genome: comparative and evolutionary analysis
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Research Initiative
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Not Reported
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NHGRI, NIDDK, NLM
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The long-term goal of this project is to develop computational algorithms and tools for charting the gene regulatory landscape of the human genome. The main objective is to predict computationally the function of non-coding sequences in the human and other metazoan genomes. Collaborations with experimental laboratories allow for testing computational predictions in vivo and facilitate addressing gene regulation and development pathways specific to different organs and tissue types—studying both the enhancement and repression of gene expression, and using different model organisms like frogs, mice, and zebrafish. For example, using zebrafish as an animal model for transgene expression in heart development, researchers are examining a whole-genome characterization of gene regulatory pathways and enhancer elements to generate a complete map of heart regulatory elements in the human genome for follow up diagnostic and drug discovery studies. Researchers are also studying the regulatory genomics of Polycystic ovary syndrome (PCOS). The research framework integrates genomics, statistical analysis, patient data, and artificial intelligence (AI) to unravel the mechanisms and genomic components underlying PCOS. By investigating this specific disorder, researchers aim to identify key genetic variants associated with PCOS, laying the groundwork for novel diagnostics, experimental validation, and drug discovery.
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Research Coordination Team, NIAID/Armed Forces Radiobiology Research Institute (AFRRI) /Uniformed Services University for Health Sciences (USUHS)
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Committee, Work group, Advisory group, or Task Force
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Not Reported
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NIAID
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The Research Coordinating Team (RCT) has been successfully reestablished and will continue to meet quarterly in 2023. The purpose of the RCT is to discuss progress, resolve any concerns and to explore new areas of research to be conducted under the inter-agency agreement between NIAID and AFRRI/USUHS.
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