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X-WR-CALDESC:Events for Rare Parenting
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DTSTART;VALUE=DATE:20250422
DTEND;VALUE=DATE:20250425
DTSTAMP:20240716T142426Z
CREATED:20240716T142329Z
LAST-MODIFIED:20240716T142426Z
UID:12183-1745280000-1745539199@rareparenting.com
SUMMARY:World Orphan Drug Congress USA 2025
DESCRIPTION:The World Orphan Drug Congress brings together leaders from pharmaceutical and biotech companies\, government and regulatory authorities\, patient advocacy groups\, payers\, investors\, and solution providers. This conference serves as a platform to discuss advancements in orphan drug development and enhance access to life-saving therapies for individuals with rare diseases. Attendees can look forward to a comprehensive three-day program in Boston\, featuring an inclusive gathering of rare disease stakeholders dedicated to driving progress in the field.
URL:https://rareparenting.com/event/world-orphan-drug-congress-usa-2025/
LOCATION:Boston Convention & Exhibition Center\, 415 Summer Street\, Boston\, MA\, 02210\, United States
CATEGORIES:Conference
ATTACH;FMTTYPE=image/jpeg:https://rareparenting.com/wp-content/uploads/2024/07/t2.jpg
ORGANIZER;CN="Terrapinn":MAILTO:enquiry.usa@terrapinn.com
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20241219
DTEND;VALUE=DATE:20241222
DTSTAMP:20240716T142605Z
CREATED:20240716T142338Z
LAST-MODIFIED:20240716T142605Z
UID:12136-1734566400-1734825599@rareparenting.com
SUMMARY:38th Annual MPS Family and Scientific Conference
DESCRIPTION:Join the National MPS Society for their 38th Annual Family and Scientific Conference as they celebrate 50 years! This milestone event will feature speakers from across the country addressing the latest in science\, research\, and care management for mucopolysaccharidoses (MPS) and mucolipidoses (ML). Families can enjoy creating memories together in the vibrant setting of Orlando\, Florida\, amidst holiday season activities and restaurants. The weekend will be an opportunity to explore the many parks in Walt Disney World\, catch up with old friends\, and meet new families. Society members are also welcome to join the board of directors meeting at 8:00 a.m. on Thursday\, Dec. 19. Save the date for December 19 – 21\, 2024. Registration is now open!
URL:https://rareparenting.com/event/38th-annual-family-and-scientific-conference/
LOCATION:Hilton Orlando Lake Buena Vista\, 1751 Hotel Plaza Boulevard\, Lake Buena Vista\, FL\, 32830\, United States
CATEGORIES:Conference
ATTACH;FMTTYPE=image/png:https://rareparenting.com/wp-content/uploads/2024/07/nps.png
ORGANIZER;CN="National MPS Society":MAILTO:info@mpssociety.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241206
DTEND;VALUE=DATE:20241211
DTSTAMP:20240710T152513Z
CREATED:20240710T152513Z
LAST-MODIFIED:20240710T152513Z
UID:12128-1733443200-1733875199@rareparenting.com
SUMMARY:American Epilepsy Society (AES) 2024 Annual Meeting
DESCRIPTION:The AES Annual Meeting stands as the foremost gathering for healthcare providers\, scientists\, advocates\, industry professionals\, and others committed to improving outcomes for individuals with epilepsy. \nThis event features five days of exceptional live educational content\, cutting-edge scientific advancements\, the latest tools and technologies\, and a unique atmosphere of energy and community unparalleled in its field.
URL:https://rareparenting.com/event/american-epilepsy-society-aes-2024-annual-meeting/
LOCATION:Los Angeles Convention Center\, 1201 S Figueroa Street\, Los Angeles\, CA\, 90015\, United States
CATEGORIES:Conference
ATTACH;FMTTYPE=image/png:https://rareparenting.com/wp-content/uploads/2024/07/aes.png
ORGANIZER;CN="American Epilepsy Society":MAILTO:info@aesnet.org
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20241122
DTEND;VALUE=DATE:20241124
DTSTAMP:20240712T195823Z
CREATED:20240712T195751Z
LAST-MODIFIED:20240712T195823Z
UID:12120-1732233600-1732406399@rareparenting.com
SUMMARY:RAREfest24
DESCRIPTION:RAREfest24\, a scientific\, educational\, and community-centric event\, is scheduled for November 22 and 23 at the Guildhall in Cambridge. This 2-day festival celebrates rare diseases with interactive talks\, demos\, exhibits\, film\, and art\, highlighting innovative science\, visionary technology\, and pioneering organizations that bring hope to those affected. RAREfest is a biannual event aiming to shift perceptions about rare diseases\, fostering education\, engagement\, connections\, collaboration\, and action. It’s designed for experts\, the curious\, and everyone interested in making a difference.
URL:https://rareparenting.com/event/rarefest24/
LOCATION:Guildhall\, Cambridge\, Guildhall Place\, Market Hill\, Cambridge\, CB2 3QJ\, United Kingdom
CATEGORIES:Conference
ATTACH;FMTTYPE=image/png:https://rareparenting.com/wp-content/uploads/2024/07/rarefest.png
ORGANIZER;CN="Cambridge Rare Disease Network":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241121T100000
DTEND;TZID=America/New_York:20241121T120000
DTSTAMP:20241107T153250Z
CREATED:20241107T153112Z
LAST-MODIFIED:20241107T153250Z
UID:12616-1732183200-1732190400@rareparenting.com
SUMMARY:Coffee & Conversations for Parents of Children with Neurodivergence or Rare Diagnoses
DESCRIPTION:​Join us for a morning of connecting with other mothers also navigating the journey of raising children with neurodivergence and other rare diagnoses. This space is crafted for meaningful conversations around finding authentic support and recharging your battery as a caregiver. Think of this morning as an opportunity to reconnect with yourself\, fill your cup\, and connect with a helpful community. \n​For the educational part of this morning we have partnered with Dr. Emily\, from EMPower PT who will share her expertise on motor milestones. \n​What You’ll Take Away:\n​Connection with other parents who “get it”\n​A support network for your parenting journey\nInsights on supporting your own wellness as a caregiver\n​Q&A with Dr. Emily on child development \n​Who’s This For?\nParents and caregivers of children with neurodivergence\, including ADHD\, Autism\, and Sensory Processing Disorder\, or with any genetic or neurological conditions. \nREGISTER HERE!
URL:https://rareparenting.com/event/coffee-conversations-for-parents-of-children-with-neurodivergence-or-rare-diagnoses/
LOCATION:Healthy Baby\, 21 Warren Street\, New York\, NY\, 10007\, United States
CATEGORIES:Meet Up
ATTACH;FMTTYPE=image/png:https://rareparenting.com/wp-content/uploads/2024/11/LOGO-EMpower-PT-P.C.-2.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241115T170000
DTEND;TZID=America/New_York:20241117T170000
DTSTAMP:20240708T172329Z
CREATED:20240613T215545Z
LAST-MODIFIED:20240708T172329Z
UID:11451-1731690000-1731862800@rareparenting.com
SUMMARY:FOXG1 Syndrome Parents Conference 2024
DESCRIPTION:The 2024 FOXG1 Syndrome Parents Conference will be held November 15th-17th\, 2024 at the Marriott Resort Fort Lauderdale Pompano Beach. In this retreat setting\, FOXG1 parents will connect with other FOXG1 parents\, scientists\, and leading FOXG1 clinicians to learn about the spectrum of FOXG1 syndrome\, the FOXG1 research strategy towards a cure\, and parenting children with complex needs. The theme of conference is Connect – Learn – Inspire. \nWe hope attendees leave with newfound hope for the future. We can’t wait to bring our community together to support and uplift one another!
URL:https://rareparenting.com/event/foxg1-syndrome-parents-conference-2024/
LOCATION:Marriott Resort Fort Lauderdale Pompano Beach\, 1200 North Ocean Boulevard\, Pompano Beach\,\, 33062\, United States
CATEGORIES:Conference
ATTACH;FMTTYPE=image/png:https://rareparenting.com/wp-content/uploads/2024/06/Screenshot-2024-06-13-at-2.36.58 PM.png
ORGANIZER;CN="FOXG1 Research Foundation":MAILTO:contact@foxg1research.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241112
DTEND;VALUE=DATE:20241114
DTSTAMP:20240712T195845Z
CREATED:20240712T195734Z
LAST-MODIFIED:20240712T195845Z
UID:12175-1731369600-1731542399@rareparenting.com
SUMMARY:Advanced Therapies USA 2024
DESCRIPTION:The Advanced Therapies Congress will feature speakers from across the entire value chain of cell and gene therapy development\, offering 8 tracks of content over 2 days. Attendees can engage with 50 leading solution providers to support all stages of cell and gene therapy development. Additionally\, there will be opportunities to connect with thousands of experts during over 12 hours of dedicated 1-to-1 networking sessions.
URL:https://rareparenting.com/event/advanced-therapies-usa-2024/
LOCATION:Pennsylvania Convention Center\, 1101 Arch Street\, Philadelphia\, PA\, 19107\, United States
CATEGORIES:Conference
ATTACH;FMTTYPE=image/png:https://rareparenting.com/wp-content/uploads/2024/07/terrapinn.png
ORGANIZER;CN="Terrapinnn":MAILTO:enquiry.usa@terrapinn.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241022
DTEND;VALUE=DATE:20241026
DTSTAMP:20240712T195910Z
CREATED:20240712T195728Z
LAST-MODIFIED:20240712T195910Z
UID:12191-1729555200-1729900799@rareparenting.com
SUMMARY:EU World Orphan Drug Congress 2024
DESCRIPTION:The World Orphan Drug Congress is the largest and most established global meeting focused on orphan drugs and rare diseases. It covers topics such as cell and gene therapy\, genetic testing\, market access\, real-world evidence\, and orphan drug policy. With over 130 leading solution providers from around the world\, the congress showcases new ways of thinking and novel partnerships to generate innovative solutions. \nNetworking is a key feature of the World Orphan Drug Congress. Attendees will have the opportunity to connect directly with thousands of pharmaceutical experts during three days of dedicated 1-2-1 networking sessions.
URL:https://rareparenting.com/event/eu-world-orphan-drug-congress-2024/
LOCATION:Fira de Barcelona\, Av. de la Reina Maria Cristina\, s/n\, Sants-Montjuïc\, Barcelona\, Catalonia\, 08004\, Spain
CATEGORIES:Conference
ATTACH;FMTTYPE=image/jpeg:https://rareparenting.com/wp-content/uploads/2024/07/t4.jpg
ORGANIZER;CN="Terrapinn":MAILTO:enquiry.usa@terrapinn.com
END:VEVENT
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