doi: https://www.doi.org/10.7303/syn26008052 event: Hack for Rare 2021 summary: Patients grapple with a myriad of personal and social issues throughout their life. Furthermore, with NF being a rare disease, many stakeholders have difficulty finding others with shared experiences, connecting with them, and hearing their stories.As part of our project, we have developed a website, which houses a curated podcast series on which we convene patients, caregivers, and clinicians to discuss the topics that matter most to the NF community. onSynapse: syn26008052 initiative: 2021 Hack for Rare studyLeads: 3418671 3428700 3431386 studyStatus: Completed fundingAgency: CTF tab1wikipointer: syn26008052/wiki/611932 acknowledgementStatements: If you use data/concepts from this hackathon project in a publication or talk, please acknowledge the authors of this hackathon project. In addition, please acknowledge the Children's Tumor Foundation and NF Data Portal using the following statement: "The results published here are in whole or in part based on data/concepts made available through the NF Open Science Initiative and CTF Hack for Rare 2021." syn26015379 syn26015378 syn26015061
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LetstalkaboutNF.com -- curated podcast series that facilitates discussion around the shared yet unique experiences of the NF community page is loading…