Global Genes Week in Rare

Sep 09 08:00 AM • Multiple sites in Kansas City 47th Annual Meeting of the Society for Craniofacial Genetics & Developmental Biology Where: National World War I Museum & Memorial (1st evening), Stowers Institute for Medical Research (full 2nd day) & Children’s Mercy Research Institute (final morning on 3rd day). A link to the meeting and registration information is below: https://www.scgdb.org/copy-of-annual-meeting-1 Society membership and meeting registration are very reasonable! Contact: Timothy Cox (He/him), Professor & Endowed Chair in Dental & Mineralized Tissue Research; Oral & Craniofacial Sciences (Dentistry), and Pediatrics (Medicine); Email: coxtc@umkc.edu;  Phone: 8162352068 Sep 12 08:00 AM • University of Kansas Clinical Research Center 4350 Shawnee Mission Parkway, CTSU Suite 3300 Fairway, KS 66205 Biobank Blood Drive 2024 Help advance cancer research by participating in the annual Biospecimen Blood Drive. The event differs from other blood drives in that donors give only a small amount of blood: equivalent to the amount collected for a standard blood test. Sep 18 08:00 AM • In-person Heartland Conference on Health Equity & Patient-Centered Care With the recognition of the critical roles patient, community and team-informed science plays in health research, mechanisms to promote, facilitate and reward team and community engaged science are emerging. Diverse teams of collaborating scholars and meaningful inclusion of patients, providers, community members and other key stakeholders in decision-making is sorely needed to address research challenges and advance health improvement for all. With this conference, we would like to explore the rich interplay of community and university together, with the thought that the strength of our community may determine meaningful research priorities and relevant programs and providers. The Heartland Conference on Health Equity and Patient Centered Care highlights community - academic partnerships and encourages open discussion among academic health centers, community health workers, faith-based community, and community-based service organizations. ​Participants will engage with other regional health researchers, community-based organizations, and public health professionals to address health equity in our communities and region. More information. Sep 18 11:00 AM • Virtual CTSA Connections -Climate Change & Environmental Health The purpose of these zoom collaboration calls is to promote connections between these eight CTSA Institutions, which form the Consortium of Rural States (CORES), in preparation for the release of the annual CORES InterInstitutional Funding Opportunity. Join us for a series of three zoom meetings to listen, share your research focus and ideas, and make connections with potential collaborators at CORES institutions. CTSA Inter‐Institutional Pilot Project Introduction The Clinical and Translational Science Awards (CTSA) programs of the University of New Mexico Health Sciences Center (UNM HSC), Frontiers Clinical & Translational Science Institute, University of Kentucky (UK), University of Arkansas for Medical Sciences (UAMS), University of Iowa (UI), Dartmouth College, Penn State University, and the University of Utah Health are seeking to make connections for all faculty members—senior as well as junior investigators —for pilot projects that will exemplify the CTSA mission of developing clinical and translational research, to promote and support the “bench to bedside to community and practice and back” goal of the National Institutes of Health, National Center for Advancing Translational Science (NCATS). These meetings will focus on the four areas of the National Institutes of Health (NIH) strategic plan and its commitment to increasing representation in research which addresses issues of disparities either because of rurality or underrepresented and disadvantaged groups: • Climate Change and Environmental Health • Health Equity for Underrepresented Populations • For example, pediatric populations, older adults, people with disabilities and/or rare disorders, underrepresented racial/ethnic and/or sexual and gender minorities, rural populations, or populations with low socio-economic status. Click here for more details. • Rural Health • Maternal Health Sep 19 12:00 PM • Health Education Building, Rm. B104 KUMC Cores Showcase 2024 12:00p – 2:00p Welcome and updates from the Office of the Senior AssociateDean for Research Keynote and Lunch: Illumina, presenting the new NovaSeq X Plus Sequencer (in our Genomics Core) Short seminar and lightening talks from 10X Genomics, Biostatistics and Data Sciences, and more. 2:00p – 3:30p Poster and Networking Session Core posters, vendor tables, fun treats! For more information, click here.  Sep 19 03:00 PM • In-person and Virtual Innovations in Quality: Improving Equity and Outcomes in Maternal Care (2024) For more information and to register, visit the link below. Sep 20 07:00 AM • Children's Mercy Park (1 Sporting Way, Kansas City, Kan. 66111) Birth Equity Summit Join the Kansas Birth Equity Network for the third annual Birth Equity Summit in collaboration with the Heartland Conference! We are excited to bring stakeholders across the state and region together to celebrate the important work of parents, birth workers, community members, and so many more to advance birth equity. Sep 23 09:00 AM • Virtual Frontiers Fall Roadshow Learn more about Frontiers, its resources and services from our PIs Drs. Mario Castro and Steve Leeder.  Also learn more about our education and training programs, and funding opportunities. Sep 25 08:00 AM • Loews Kansas City Hotel Global Genes Week in Rare Week in RARE combines the RARE Advocacy Summit and RARE Health Equity Forum, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation. Sep 26 12:00 PM • Virtual Research & Discovery Grand Rounds- Film Screening & Discussion- Lifelines of Care: Kansas Community Health Workers Making a Difference Ton Mirás Neira, Community Health Worker Project Manager with COPE: Communities Organizing to Promote Equity, in the Department of Family Medicine at KU Medical Center will present a segment of the documentary film "Lifelines of Care: Kansas Community Health Workers Making a Difference" followed by discussion. Join webinar.  Sep 30 07:00 PM • Virtual and In-person Center for Practical Bioethics: Leaving Patients to Their Own Devices: Will 24/7 AI Health Apps Make Us Healthier? Do you monitor your heart rate, blood oxygen or sleep on a smart watch or track your walks, bike rides and runs on a smart phone?  Direct-to-consumer health apps like these are increasingly popular because they presumably: Provide cheap, user friendly, 24/7 access to personal health information Allow users to manage their own health with the information Help users ask doctors the right questions Give users “self-knowledge through numbers"  But they also raise concerns: Blind trust in technology and algorithms that have not gone through rigorous testing  Limited evidence of clinical value or even accuracy Data collection outside of clinical settings changing the meaning of autonomy, privacy and well-being Corporations increasingly owning and sharing our personal and health data Potential impact on therapeutic relationships and health systems Anita Ho, PhD, MPH, will present the Center's 30th Annual Rosemary Flanigan Lecture on September 30, 7:00 PM at Saint Joseph Medical Center, 1000 Carondelet Drive, Kansas City, MO. Dr. Ho will weigh pros and cons of AI in personal healthcare to help you understand ethics implications and make informed decisions about using AI healthcare apps and devices. Dr. Ho is a bioethicist with unique combined academic training and experience in philosophy, clinical/organizational ethics, public and global health, and business. She is a Clinical Professor at University of British Columbia Centre for Applied Ethics and Associate Professor at University of California, San Francisco Bioethics Program. She is also the Vice President in Ethics for CommonSpirit Health in California, an elected fellow of The Hastings Center, and a Center for Practical Bioethics Board Member. Her recent book, Live Like Nobody is Watching: Relational Autonomy in the Age of Artificial Intelligence Monitoring, was published by Oxford Press in May 2023. More information on registration to come.    Oct 02 11:00 AM • Zoom CTSA Connections - Health Equity for Underrepresented Populations and Rural Health The purpose of these zoom collaboration calls is to promote connections between these eight CTSA Institutions, which form the Consortium of Rural States (CORES), in preparation for the release of the annual CORES InterInstitutional Funding Opportunity. Join us for a series of three zoom meetings to listen, share your research focus and ideas, and make connections with potential collaborators at CORES institutions. CTSA Inter‐Institutional Pilot Project Introduction The Clinical and Translational Science Awards (CTSA) programs of the University of New Mexico Health Sciences Center (UNM HSC), Frontiers Clinical & Translational Science Institute, University of Kentucky (UK), University of Arkansas for Medical Sciences (UAMS), University of Iowa (UI), Dartmouth College, Penn State University, and the University of Utah Health are seeking to make connections for all faculty members—senior as well as junior investigators —for pilot projects that will exemplify the CTSA mission of developing clinical and translational research, to promote and support the “bench to bedside to community and practice and back” goal of the National Institutes of Health, National Center for Advancing Translational Science (NCATS). These meetings will focus on the four areas of the National Institutes of Health (NIH) strategic plan and its commitment to increasing representation in research which addresses issues of disparities either because of rurality or underrepresented and disadvantaged groups: • Climate Change and Environmental Health • Health Equity for Underrepresented Populations • For example, pediatric populations, older adults, people with disabilities and/or rare disorders, underrepresented racial/ethnic and/or sexual and gender minorities, rural populations, or populations with low socio-economic status. Click here for more details. • Rural Health • Maternal Health  Oct 12 08:30 AM • University of Kansas Medical Center in the Health Education Building, Room 205 Mental Health First Aid (MFHA) training What is Adult Mental Health First-Aid? Mental Health First Aid is an 8-hour training program to teach participants how to support adults in various mental health challenges, crises, and worsening situations. What will you learn? You will learn to recognize the signs and symptoms of different mental health challenges, such as anxiety attacks, suicidal ideation, and borderline personality disorder. It's important to note that MFHA does not cover how to diagnose or treat mental health or substance use challenges. What will you receive? Upon completing the training, you will receive a 3-year certificate and gain specific tools and strategies for taking the first steps to provide safety for all individuals in challenging situations. Will food be available? Yes, breakfast, lunch, and snacks will be provided. Please note that the training is limited to 30 people, and you must attend the entire class to receive the certificate. This opportunity is open to everyone, so feel free to share it with your network. Free parking in P4.  Oct 16 11:00 AM • Zoom CTSA Connections - Maternal Health The purpose of these zoom collaboration calls is to promote connections between these eight CTSA Institutions, which form the Consortium of Rural States (CORES), in preparation for the release of the annual CORES InterInstitutional Funding Opportunity. Join us for a series of three zoom meetings to listen, share your research focus and ideas, and make connections with potential collaborators at CORES institutions. CTSA Inter‐Institutional Pilot Project Introduction The Clinical and Translational Science Awards (CTSA) programs of the University of New Mexico Health Sciences Center (UNM HSC), Frontiers Clinical & Translational Science Institute, University of Kentucky (UK), University of Arkansas for Medical Sciences (UAMS), University of Iowa (UI), Dartmouth College, Penn State University, and the University of Utah Health are seeking to make connections for all faculty members—senior as well as junior investigators —for pilot projects that will exemplify the CTSA mission of developing clinical and translational research, to promote and support the “bench to bedside to community and practice and back” goal of the National Institutes of Health, National Center for Advancing Translational Science (NCATS). These meetings will focus on the four areas of the National Institutes of Health (NIH) strategic plan and its commitment to increasing representation in research which addresses issues of disparities either because of rurality or underrepresented and disadvantaged groups: • Climate Change and Environmental Health • Health Equity for Underrepresented Populations • For example, pediatric populations, older adults, people with disabilities and/or rare disorders, underrepresented racial/ethnic and/or sexual and gender minorities, rural populations, or populations with low socio-economic status. Click here for more details. • Rural Health • Maternal Health  Oct 17 12:00 PM • Virtual Translational Science versus Translational Research: What is the Difference? Speakers: Lisa Sanderson Cox, PhD, Nihar Nayak, DVM, PhD, Robin Liston, MPH   Additional information to come.  Oct 21 09:00 AM • UW-Madison Campus – Health Sciences Learning Center Enriching Recruitment via Implementation Science Are you struggling to recruit participants that accurately represent the community for which your research is intended? The Institute for Clinical and Translational Research invites you to attend the 2024 D&I Short Course. Join us for this free, on-site, two-day workshop for engaging presentations, interactive small group sessions, and insights from community experts More information. Nov 01 11:30 AM • KU Edwards Campus One Health Day 2024: Food as Medicine Discover the complexity of food and learn how nutrition impacts the overall health of both humans and animals at this year’s One Health Day. We’ll meet from 11:30 a.m. to 3:00 p.m. to discuss Food as Medicine at the KU Edwards campus. Nov 07 05:30 PM • The Midland, Kansas City 2024 BioNexus KC Annual Event For over two decades, BioNexus KC has cultivated deep roots within our community, empowering and uniting diverse regional life sciences efforts. The 2024 Annual Event will bring together leaders, innovators, and stakeholders to celebrate our regional 'homegrown' journey of advancement and collaboration in the life sciences community. Join BioNexus as we explore the principles of locally-driven initiatives with urban policy expert and author Bruce Katz, this year's keynote speaker. Katz will share insights on how we can achieve more impactful change, showcasing the shifting power of place. Nov 14 04:00 PM • Virtual Informatics Meetup, Nov. 14 Meetup Registration - Frontiers Informatics Meetup Registration Form  Scheduled Zoom meeting. Join Zoom Meeting Meeting ID: 958 1678 6833 Passcode: 651084 --- One tap mobile +13462487799,,95816786833#,,,,*651084# US (Houston) +14086380968,,95816786833#,,,,*651084# US (San Jose) --- Dial by your location • +1 346 248 7799 US (Houston) • +1 408 638 0968 US (San Jose) • +1 669 444 9171 US • +1 669 900 6833 US (San Jose) • +1 719 359 4580 US • +1 253 205 0468 US • +1 253 215 8782 US (Tacoma) • +1 309 205 3325 US • +1 312 626 6799 US (Chicago) • +1 360 209 5623 US • +1 386 347 5053 US • +1 507 473 4847 US • +1 564 217 2000 US • +1 646 876 9923 US (New York) • +1 646 931 3860 US • +1 689 278 1000 US • +1 301 715 8592 US (Washington DC) • +1 305 224 1968 US Meeting ID: 958 1678 6833 Passcode: 651084 Find your local number: https://kumc-ois.zoom.us/u/adj4HVunt1 Join by SIP • 95816786833@zoomcrc.com Nov 21 12:00 PM • Virtual Research and Discovery Grand Rounds: Translational Science versus Translational Research: What is the Difference? Speakers: Lisa Sanderson Cox, PhD, Nihar Nayak, DVM, PhD, Robin Liston, MPH Nov 21 03:00 PM • In-person and Virtual Innovations in Quality: Opportunities and Challenges in Rural Health For more information and to register, click on the link below.  Dec 06 08:00 AM • Kansas State University Olathe campus Fall 2024 Mock Study Section Visit the Mock Study Section on the Education & Training page for more information.  Sep 26 09:00 AM • Westin Crown Center, Kansas City, Mo. 2025 International LAM Research Conference & LAMposium The International LAM Research Conference & LAMposium is The LAM Foundation’s marquee event, which includes a state-of-the-art scientific meeting and a dedicated patient and family conference. Next year’s event will continue the highly successful format of blending patient and family participation with leading-edge discussions about basic and translational advances in LAM research. We look forward to welcoming attendees from around the world to this important conference that will celebrate the LAM community's research innovation, courage, and resilience as we strive to find better treatments and ultimately a cure for LAM.