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X-WR-CALNAME:The Rare Bone Disease Alliance | RBDA
X-ORIGINAL-URL:https://845.287.myftpupload.com
X-WR-CALDESC:Events for The Rare Bone Disease Alliance | RBDA
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DTSTART;TZID=America/New_York:20260402T150000
DTEND;TZID=America/New_York:20260402T163000
DTSTAMP:20260521T130408
CREATED:20250919T162406Z
LAST-MODIFIED:20250919T162406Z
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SUMMARY:RBD ECHO: Precision Medicine Modeling of New Skeletal Disorders
DESCRIPTION:Precision Medicine Modeling of New Skeletal Disorders\nLindsay C. Burrage\, MD\, PhD\nAssociate Professor\, Department of Molecular and Human Genetics; Attending Physician\, Inborn Errors of Metabolism & Skeletal Dysplasia Clinics\, Baylor College of Medicine \nCLICK HERE TO REGISTER TO ATTEND \nThe Rare Bone Disease TeleECHO Clinic Series is a medical educational program\, a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes)\, focused on building capacity to safely and effectively diagnose and treat rare bone diseases and disorders. Physicians of all specialties\, nurse practitioners\, physician assistants\, and other healthcare professionals with an interest in rare bone conditions are welcome to attend these monthly case-based telementoring presentations and discussions.
URL:https://845.287.myftpupload.com/event/rbd-echo-precision-medicine-modeling-of-new-skeletal-disorders/
CATEGORIES:General,RBD TeleECHO
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/09/April-2026-RBDA-Echo.avif
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260305T150000
DTEND;TZID=America/New_York:20260305T163000
DTSTAMP:20260521T130408
CREATED:20250919T161632Z
LAST-MODIFIED:20250919T161632Z
UID:2045-1772722800-1772728200@845.287.myftpupload.com
SUMMARY:RBD ECHO: Skeletal Manifestations of Gaucher Disease
DESCRIPTION:Skeletal Manifestations of Gaucher Disease\nDerralynn Hughes\, MBBS\, PhD \nProfessor of Experimental Haematology; Clinical Director of Haematology\, Oncology & Palliative Care; Lead Cancer Physician\nUniversity College London & Royal Free London NHS Foundation Trust\, UK \nCLICK HERE TO REGISTER TO ATTEND \nThe Rare Bone Disease TeleECHO Clinic Series is a medical educational program\, a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes)\, focused on building capacity to safely and effectively diagnose and treat rare bone diseases and disorders. Physicians of all specialties\, nurse practitioners\, physician assistants\, and other healthcare professionals with an interest in rare bone conditions are welcome to attend these monthly case-based telementoring presentations and discussions.
URL:https://845.287.myftpupload.com/event/rbd-echo-skeletal-manifestations-of-gaucher-disease/
CATEGORIES:General,RBD TeleECHO
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/09/March-2026-RBDA-Echo.avif
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260205T150000
DTEND;TZID=America/New_York:20260205T163000
DTSTAMP:20260521T130408
CREATED:20250919T161103Z
LAST-MODIFIED:20250919T161717Z
UID:2042-1770303600-1770309000@845.287.myftpupload.com
SUMMARY:RBD ECHO: OPPG or Skeletal Dysplasias in the Plain Community
DESCRIPTION:OPPG or Skeletal Dysplasias in the Plain Community\nGrace Loudon Meier\, MD\nFamily Medicine Physician; Director of Adult Services Program\nClinic for Special Children\, Pennsylvania \nCLICK HERE TO REGISTER TO ATTEND \nThe Rare Bone Disease TeleECHO Clinic Series is a medical educational program\, a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes)\, focused on building capacity to safely and effectively diagnose and treat rare bone diseases and disorders. Physicians of all specialties\, nurse practitioners\, physician assistants\, and other healthcare professionals with an interest in rare bone conditions are welcome to attend these monthly case-based telementoring presentations and discussions.
URL:https://845.287.myftpupload.com/event/rbd-echo-oppg-or-skeletal-dysplasias-in-the-plain-community/
CATEGORIES:General,RBD TeleECHO
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/09/Feb-2026-RBDA-Echo.avif
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260108T150000
DTEND;TZID=America/New_York:20260108T163000
DTSTAMP:20260521T130408
CREATED:20250919T160321Z
LAST-MODIFIED:20250919T160321Z
UID:2038-1767884400-1767889800@845.287.myftpupload.com
SUMMARY:RBD ECHO: Canarsie Engelman Diseases
DESCRIPTION:Canarsie Engelman Diseases\nMichael Whyte\, MD\nProfessor Emeritus of Medicine\, Pediatrics and Genetics; Former Director\, Center for Metabolic Bone Disease and Molecular Research\, Shriners Hospitals for Children – St. Louis\, Washington University School of Medicine \nCLICK HERE TO REGISTER TO ATTEND \nThe Rare Bone Disease TeleECHO Clinic Series is a medical educational program\, a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes)\, focused on building capacity to safely and effectively diagnose and treat rare bone diseases and disorders. Physicians of all specialties\, nurse practitioners\, physician assistants\, and other healthcare professionals with an interest in rare bone conditions are welcome to attend these monthly case-based telementoring presentations and discussions.
URL:https://845.287.myftpupload.com/event/rbd-echo-canarsie-engelman-diseases/
CATEGORIES:General,RBD TeleECHO
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/09/Jan-2025-RBDA-Echo.avif
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251204T150000
DTEND;TZID=America/New_York:20251204T163000
DTSTAMP:20260521T130408
CREATED:20250918T170915Z
LAST-MODIFIED:20250918T170915Z
UID:2034-1764860400-1764865800@845.287.myftpupload.com
SUMMARY:RBD ECHO: The Impact of Monoclonal Gammopathies on Bone Health
DESCRIPTION:The Impact of Monoclonal Gammopathies on Bone Health\nMatthew Drake\, MD\, PhD Chief\, Endocrinology and Metabolic Bone Service\, Endocrinology and Metabolic Bone Physician Hospital for Special Surgery (HSS)\, New York City \nCLICK HERE TO REGISTER TO ATTEND \nThe Rare Bone Disease TeleECHO Clinic Series is a medical educational program\, a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes)\, focused on building capacity to safely and effectively diagnose and treat rare bone diseases and disorders. Physicians of all specialties\, nurse practitioners\, physician assistants\, and other healthcare professionals with an interest in rare bone conditions are welcome to attend these monthly case-based telementoring presentations and discussions.
URL:https://845.287.myftpupload.com/event/rbd-echo-the-impact-of-monoclonal-gammopathies-on-bone-health/
CATEGORIES:General,RBD TeleECHO
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/09/Dec-2025-RBDA-Echo.avif
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251113T183000
DTEND;TZID=America/New_York:20251113T210000
DTSTAMP:20260521T130408
CREATED:20250929T194535Z
LAST-MODIFIED:20250929T194657Z
UID:2092-1763058600-1763067600@845.287.myftpupload.com
SUMMARY:Washington\, DC Metabolic & Rare Bone Disease Club Dinner November
DESCRIPTION:Join the Washington\, DC Metabolic & Rare Bone Disease Club on November 13\, 2025 for the fourth in a series of quarterly dinners focused on new developments in research\, diagnosis\, and treatment of metabolic and rare bone disorders. \nPedro A. Sanchez-Lara\, MD\, MSCE\, FAAP\, FACMG\, \nDirector of Pediatric Clinical Genetics at Cedars-Sinai Medical Center and Associate Clinical Professor of Pediatrics at the David Geffen School of Medicine at the University of California in Los Angeles(UCLA) \npresented by\n\n \nThe goal of the Washington\, DC Metabolic & Rare Bone Disease Club is to bring together endocrinologists\, rheumatologists\, geneticists and orthopaedic surgeons with easy access to innovative and robust data as well as to help them expand their professional relationships across the varied disciplines that care for these challenging patients. We want to include BOTH pediatric and adult practitioners as the natural history of these disorders is changing rapidly\, and we want to help improve care across the age span. Perhaps most importantly\, we want to extend this invitation to interested physicians\, researchers\, physician assistants\, nurse practitioners\, genetic counselors\, fellows\, medical students and other professionals interested in this rapidly changing field as we seek to grow the community of clinicians focused on improving care for these thought-provoking disorders. \nThe programs will be science (not product) focused presentations sponsored by industry partners that do not provide CME. \nAnnual dues will be $50 for practicing physicians/researchers and $25 for physician assistants\, nurse practitioners and genetic counselors. There will be no fee for fellows\, residents\, or medical students. Dinners will be free and will offer a virtual attendance option. \nIf you would like to attend via Zoom or in-person\, please visit The OIF Bone Club November page\, and if you are interested in presenting a case\, please contact Melissa Bonardi at mbonardi@oif.org
URL:https://845.287.myftpupload.com/event/rbdaclubnovember2025/
LOCATION:Pooks Hill Marriott\, 5151 Pooks Hill Rd\, Bethesda\, MD\, 20814\, United States
CATEGORIES:General
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/09/bone-club-1.avif
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251106T150000
DTEND;TZID=America/New_York:20251106T163000
DTSTAMP:20260521T130408
CREATED:20250918T164759Z
LAST-MODIFIED:20251016T023615Z
UID:2030-1762441200-1762446600@845.287.myftpupload.com
SUMMARY:RBD ECHO: Heritable Non-OI Forms of Osteoporosis
DESCRIPTION:Heritable Non-OI Forms of Osteoporosis\nOuti Mäkitie\, MD PhD Professor of Pediatric Endocrinology\, Children’s Hospital\, University of Helsinki and Helsinki University Hospital\, Helsinki\, Finland Folkhälsan Research Center\, Helsinki\, Finland \nCLICK HERE TO REGISTER TO ATTEND \nThe Rare Bone Disease TeleECHO Clinic Series is a medical educational program\, a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes)\, focused on building capacity to safely and effectively diagnose and treat rare bone diseases and disorders. Physicians of all specialties\, nurse practitioners\, physician assistants\, and other healthcare professionals with an interest in rare bone conditions are welcome to attend these monthly case-based telementoring presentations and discussions.
URL:https://845.287.myftpupload.com/event/rbd-echo-heritable-non-oi-forms-of-osteoporosis/
CATEGORIES:General,RBD TeleECHO
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/09/Nov-2025-RBDA-Echo.avif
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251031T080000
DTEND;TZID=America/New_York:20251031T170000
DTSTAMP:20260521T130408
CREATED:20250922T204026Z
LAST-MODIFIED:20250922T204026Z
UID:2083-1761897600-1761930000@845.287.myftpupload.com
SUMMARY:2025 Annual Maher Family Research Grant - Applications Due
DESCRIPTION:​​​​​​​Calling all researchers\, faculty members\, senior postdoctoral trainees\, and research associates\, Soft Bones Inc.\, The US Hypophosphatasia Foundation\, is now accepting applications for the 2025 Annual Maher Family Research Grant. \nWe are interested in promoting the development of innovative research by new and established investigators by offering a $25\,000 seed grant for research that is directly related to hypophosphatasia. \nPrevious grant winners include: \n\nSteven Mumm\, PhD\, Washington University School of Medicine\nLuke Mortensen\, PhD\, University of Georgia\nBrian Foster\, PhD\, The Ohio State University\nKathryn Dahir\, MD\, Vanderbilt University Medical Center\nDobrawa Napierala\, PhD\, University of Pittsburgh School of Dental Medicine\nDana Gaddy\, PhD\, Texas A&M University\nFlavia Amadeu de Oliveira\, PhD\, Sanford Burnham Prebys Medical Discovery Institute\nFatma F. Mohamed\, PhD\, The Ohio State University College of Dentistry\nNan Hatch\, DMD\, PhD. University of Michigan School of Dentistry\nClaire Stenhouse\, PhD\, Penn State University\nValeria Guglielmi\, PhD Sanford Burnham Prebys Medical Discovery Institute\n\nFor complete grant details\, please review our flyer and download the grant application. The deadline to apply is October 31\, 2025. ​​​​​​​ \nFor questions\, please contact Denise Goodbar\, Executive Director at Soft Bones Inc.\, at (973) 723-0549 or denise@softbones.org. \nPlease share this announcement with others who might be interested in applying. \nSincerely\, \nSoft Bones\, Inc.\, The US Hypophosphatasia Foundation​​​​​​​
URL:https://845.287.myftpupload.com/event/2025-annual-maher-family-research-grant-applications-due/
CATEGORIES:General
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/09/2025_Research_Grant_Email_Header-soft-bones.avif
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251017T080000
DTEND;TZID=America/New_York:20251017T170000
DTSTAMP:20260521T130408
CREATED:20250922T194321Z
LAST-MODIFIED:20250922T194321Z
UID:2078-1760688000-1760720400@845.287.myftpupload.com
SUMMARY:OI Research Grant Opportunity - Applications Due
DESCRIPTION:Research Grant Opportunity! The Michael Geisman Fellowship Grant program awards funding to post-doctoral trainees who are currently working on projects with clear relevance to osteogenesis imperfecta (OI)\, or who have projects that will enable them to develop expertise in OI research. Learn more and apply today at https://oif.org/research-grants
URL:https://845.287.myftpupload.com/event/oi-research-grant-opportunity-applications-due/
CATEGORIES:General
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/09/geisman-image.avif
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251008T150000
DTEND;TZID=America/New_York:20251008T170000
DTSTAMP:20260521T130408
CREATED:20250903T160640Z
LAST-MODIFIED:20250904T185056Z
UID:1799-1759935600-1759942800@845.287.myftpupload.com
SUMMARY:OI ECHO: Clinical and Genetic Evaluation of Nonaccidental Trauma Versus Osteogenesis Imperfecta (Virtual)
DESCRIPTION:Join us for an upcoming OI ECHO Session! October 8\, 2025 | 3:00pm Clinical and Genetic Evaluation of Nonaccidental Trauma Versus Osteogenesis Imperfecta Natasha Shur\, MD (Children’s National Hospital)
URL:https://845.287.myftpupload.com/event/oi-echo-clinical-and-genetic-evaluation-of-nonaccidental-trauma-versus-osteogenesis-imperfecta-virtual/
LOCATION:Virtual Event\, United States
CATEGORIES:General,RBD TeleECHO
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/08/shur-Thumb.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251002T150000
DTEND;TZID=America/New_York:20251002T163000
DTSTAMP:20260521T130408
CREATED:20250905T151556Z
LAST-MODIFIED:20250905T151628Z
UID:2013-1759417200-1759422600@845.287.myftpupload.com
SUMMARY:RBD ECHO: Maternal Mineral and Bone Metabolism During Pregnancy\, Lactation\, and Post-Weaning
DESCRIPTION:Maternal Mineral and Bone Metabolism During Pregnancy\, Lactation\, and Post-Weaning \nChristopher Kovacs\, MD\, FRCPC\, FACP\, FACE\, FASBMR.\nUniversity Research Professor\, Faculty of Medicine – Endocrinology\, Health Sciences Centre\, Memorial University of Newfoundland\, Canada\, \nCLICK HERE TO REGISTER TO ATTEND \nThe Rare Bone Disease TeleECHO Clinic Series is a medical educational program\, a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes)\, focused on building capacity to safely and effectively diagnose and treat rare bone diseases and disorders. Physicians of all specialties\, nurse practitioners\, physician assistants\, and other healthcare professionals with an interest in rare bone conditions are welcome to attend these monthly case-based telementoring presentations and discussions.
URL:https://845.287.myftpupload.com/event/rbd-echo-maternal-mineral-and-bone-metabolism-during-pregnancy-lactation-and-post-weaning/
CATEGORIES:General,RBD TeleECHO
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/09/KOVACS-RBD-ECHO-Youtube-thumbnail.avif
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250911T183000
DTEND;TZID=America/New_York:20250911T210000
DTSTAMP:20260521T130408
CREATED:20250903T132434Z
LAST-MODIFIED:20250904T185044Z
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SUMMARY:Washington\, DC Metabolic & Rare Bone Disease Club Dinner September
DESCRIPTION:Join the Washington\, DC Metabolic & Rare Bone Disease Club on September 11\, 2025 for the third in a series of quarterly dinners focused on new developments in research\, diagnosis\, and treatment of metabolic and rare bone disorders. \nCharles P. McKay\, MD  Pediatric Nephrologist\,  Atrium Health\, Carolinas Medical Center and Atrium Health-University City \nRobin K. Dore\, MD Rheumatologist and Clinical Professor of Medicine\, David Geffen School of Medicine at UCLA \nExpert Insights: Views on the International X-Linked Hypophosphatemia (XLH) Management Guidelines\n\n  \npresented by\n\n \n  \nThe goal of the Washington\, DC Metabolic & Rare Bone Disease Club is to bring together endocrinologists\, rheumatologists\, geneticists and orthopaedic surgeons with easy access to innovative and robust data as well as to help them expand their professional relationships across the varied disciplines that care for these challenging patients. We want to include BOTH pediatric and adult practitioners as the natural history of these disorders is changing rapidly\, and we want to help improve care across the age span. Perhaps most importantly\, we want to extend this invitation to interested physicians\, researchers\, physician assistants\, nurse practitioners\, genetic counselors\, fellows\, medical students and other professionals interested in this rapidly changing field as we seek to grow the community of clinicians focused on improving care for these thought-provoking disorders. \nThe programs will be science (not product) focused presentations sponsored by industry partners that do not provide CME. \nAnnual dues will be $50 for practicing physicians/researchers and $25 for physician assistants\, nurse practitioners and genetic counselors. There will be no fee for fellows\, residents\, or medical students. Dinners will be free and will offer a virtual attendance option. \nIf you are interested in presenting a case\, please contact Melissa Bonardi at mbonardi@oif.org
URL:https://845.287.myftpupload.com/event/washington-dc-metabolic-rare-bone-disease-club-dinner-september/
LOCATION:Pooks Hill Marriott\, 5151 Pooks Hill Rd\, Bethesda\, MD\, 20814\, United States
CATEGORIES:General
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/08/bone-club.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250911T150000
DTEND;TZID=America/New_York:20250911T163000
DTSTAMP:20260521T130408
CREATED:20250905T145824Z
LAST-MODIFIED:20250905T145824Z
UID:2003-1757602800-1757608200@845.287.myftpupload.com
SUMMARY:RBD ECHO: Pulmonary Aspects of OI
DESCRIPTION:RBD ECHO: Pulmonary Aspects of OI\nRobert Sandhaus\, MD\, PhD \nCLICK HERE TO REGISTER TO ATTEND \nThe Rare Bone Disease TeleECHO Clinic Series is a medical educational program\, a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes)\, focused on building capacity to safely and effectively diagnose and treat rare bone diseases and disorders. Physicians of all specialties\, nurse practitioners\, physician assistants\, and other healthcare professionals with an interest in rare bone conditions are welcome to attend these monthly case-based telementoring presentations and discussions.
URL:https://845.287.myftpupload.com/event/rbd-echo-pulmonary-aspects-of-oi/
CATEGORIES:General,RBD TeleECHO
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/09/rBD-ECHO-thumbnail-Pulmonary-Aspects-of-Oi.avif
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250905T173000
DTEND;TZID=America/New_York:20250905T190000
DTSTAMP:20260521T130408
CREATED:20250903T132128Z
LAST-MODIFIED:20250904T185105Z
UID:1875-1757093400-1757098800@845.287.myftpupload.com
SUMMARY:Early and Mid-Career Investigator Reception
DESCRIPTION:The Rare Bone Disease Alliance (RBDA) invites early and mid-career investigators to a reception at the ASBMR Annual Meeting to learn more about the RBDA and to connect with others interested in rare bone disease research\, treatments and disease management. \nAttendees will learn about diagnosis and possible treatments for rare bone diseases from members of the RBDA’s Scientific Advisory Panel and patient advocacy group leaders. \n  \nRSVP HERE \nAgenda \n5:30pm – 6:15pm     Networking \n6:15pm – 6:30pm    High-level overview of the current state of research in rare bone disease\nMichael Collins\, MD\, RBDA Steering Committee Chair\, NIH \n6:30pm – 6:45pm    The Importance of Including the Patient Voice in Research\nDeb Fowler\, RBDA Leader\, Soft Bones\, Inc \n6:45pm – 7:00pm    Networking \nFood and beverages will be provided at this complimentary reception. We encourage all investigators and clinicians interested in rare bone research to join us! Please register today to insure your spot. \nThank you to Alexion for their generous support of this event \nSeattle
URL:https://845.287.myftpupload.com/event/early-and-mid-career-investigator-reception/
LOCATION:Seattle Convention Center – Rooms 618/620
CATEGORIES:General
ATTACH;FMTTYPE=image/png:https://845.287.myftpupload.com/wp-content/uploads/2025/08/rbda-reception-thumbnail.png
END:VEVENT
END:VCALENDAR