Undiagnosed Diseases Network Foundation (UDNF)
Honest Broker role for health care non profit
This project will help people with undiagnosed diseases get answers.
Posted September 26, 2024
Background & Context
We have some example templates from another organization but need our own legal advice on next steps to form an honest broker charter..
Immediate Problem
Develop an honest broker charter.
Work & Deliverables
We are establishing our organization as the honest broker of data for a NIH funded research study. We need legal guidance on how to set this up from a governance and compliance stand point. We also need help drafting an honest broker charter that outlines the governance structure.
Preparation Phase
- We will hold a call, provide example templates, and make available leadership from our organization.
Collaboration Phase
- Review example templates and create an honest broker charter.
Wrap Up
- Legal recommendations and the development of an honest broker charter.
Undiagnosed Diseases Network Foundation (UDNF)
The UDNF aims to foster collaboration among patients, clinicians, and scientists to enhance the quality of life of undiagnosed and ultra-rare disease patients. We do this by mitigating barriers to equity and access in healthcare; setting standards for patient management; and bridging diagnosis and therapeutics as well as research and clinical care in undiagnosed patients and patients with ultra-rare diseases. Led by and for patients and their families, the UDNF will become the central resource for the undiagnosed community. From when a patient first experiences unexplained symptoms to their 10-year anniversary of effective treatment, the UDNF will provide the resources, community, and research they need to live their best lives. No patient or family will have to traverse the unknown alone. We envision a learning healthcare system where researchers, clinicians, and patients work together to advance individual and community wellbeing. By leveraging advancements in science, technology, and service delivery, we aim to continuously improve health quality and efficiency for undiagnosed patients. Mission: Our mission is to improve access to diagnosis, research, and care for all individuals with undiagnosed and ultra-rare conditions. Vision: Our vision is healthcare that embraces the unknown and pursues clinical and research solutions for patient wellbeing. Values: Compassion, Empathy, and Respect Social Justice Patient & Family Centered Integrity Innovation, Discovery, and Scaleability Partnerships and Collaboration
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Undiagnosed Diseases Network Foundation (UDNF) would love your help with this project. Enter your name and email address to get started!
Undiagnosed Diseases Network Foundation (UDNF)
The UDNF aims to foster collaboration among patients, clinicians, and scientists to enhance the quality of life of undiagnosed and ultra-rare disease patients. We do this by mitigating barriers to equity and access in healthcare; setting standards for patient management; and bridging diagnosis and therapeutics as well as research and clinical care in undiagnosed patients and patients with ultra-rare diseases. Led by and for patients and their families, the UDNF will become the central resource for the undiagnosed community. From when a patient first experiences unexplained symptoms to their 10-year anniversary of effective treatment, the UDNF will provide the resources, community, and research they need to live their best lives. No patient or family will have to traverse the unknown alone. We envision a learning healthcare system where researchers, clinicians, and patients work together to advance individual and community wellbeing. By leveraging advancements in science, technology, and service delivery, we aim to continuously improve health quality and efficiency for undiagnosed patients. Mission: Our mission is to improve access to diagnosis, research, and care for all individuals with undiagnosed and ultra-rare conditions. Vision: Our vision is healthcare that embraces the unknown and pursues clinical and research solutions for patient wellbeing. Values: Compassion, Empathy, and Respect Social Justice Patient & Family Centered Integrity Innovation, Discovery, and Scaleability Partnerships and Collaboration