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April 2023
The Ehlers-Danlos Society’s 2023 EDS ECHO Summit: Hypermobility Spectrum Disorder (HSD) Virtual Conference
2023 EDS ECHO Summit: Hypermobility Spectrum Disorder (HSD) Virtual Conference April 1-2, 2023 The EDS ECHO Summit Series event will be a two-day virtual event that will take place on April 1-2, 2023, and is suitable for both healthcare professionals, and members of the community, their families, and caregivers. The event will cover all aspects of hypermobility spectrum disorders with presentations from leading experts. Please register your interest for this event here. You will receive updates via email and will…
Find out more »HCU Network America’s Spring Low Protein Cooking Class
Spring Low Protein Cooking Class Online April 1, 2023 at 2:00 PM Join HCU Network America and Chef Amber as she demonstrates for us 3 quick and easy low protein dishes! All low protein patients welcome! Click here to sign up for FREE.
Find out more »The International Waldenstrom’s Macroglobulinemia Foundation’s 2023 Educational Forum
$199
The 2023 IWMF Educational Forum Learn, Grow, Empower April 21-23, 2023 St. Louis, MO The 28th Annual IWMF Educational Forum will be a unique experience to learn from medical experts and WM community members around the world. Registration is now open! Whether you join us in person or virtually, get in the St. Louis spirit! Registration fee for in-person attendees: $199 (USD) on or before March 29th, 2023. After March 29th, $275 and $325 at the door. This fee covers breakfast, lunch, breaks, and dinner…
Find out more »Glu1 Deficiency Foundation’s Research Roundtable
Research Roundtable: Understanding Speech and Language Challenges in Glut1 Deficiency April 25, 2023 Featuring Professor Dr. Jörg Klepper and Kristina Simonyan, MD, PhD, Dr. Med To register, click here.
Find out more »SynGAP Research Fund’s A Data-Driven Approach to Reconstructing Disease Trajectories in SYNGAP1-Related Disorders
SynGAP Research Fund's A Data-Driven Approach to Reconstructing Disease Trajectories in SYNGAP1-Related Disorders April 27, 2023 Speaker: Jillian McKee, MD, PhD, Children's Hospital of Philadelphia To register, click here.
Find out more »MS Views and News’ Compass to MS Care: Understanding More About MS + Speech Issues
MS Views and News Compass to MS Care April 29, 2023 Special Guest Speaker: Megan Weigel, DNP, ARNP-C, MSCN Presentation includes: • Understanding more about MS • How to access the care and specialists you may need to address all aspects of living with MS. Access to care within your community • The importance of Complementary Therapies, nutrition, stress management, sleep & lifestyle Topics: SPEECH & SWALLOWING Issues in MS – Listen with Tina Allis, SLP (Speech-Language Pathologist) Listen and…
Find out more »May 2023
National Organization for Rare Disorders’ Living Rare, Living Stronger Patient and Family Forum
NORD's Living Rare, Living Stronger Patient & Family Forum May 6, 2023 featuring the Rare Impact Awards (May 4) Hosted at the Renaissance Downtown Hotel, we will bring the rare disease community together in our nation’s capital for a day of learning, networking and fun! Hear real stories from our community and gain practical knowledge to help you live your best life while navigating your rare disease journey. To register, click here.
Find out more »June 2023
The FSHD Society’s 30th Annual FSHD Society International Research Congress
$350
30th Annual FSHD Society International Research Congress June 15-16, 2023 Milan, Italy The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. World renowned clinicians, medical researchers, pharmaceutical industry leaders and basic scientists present and discuss new developments, reinforce collaborative efforts, facilitate new initiatives, and coordinate research and clinical activities. With the recent advances in FSHD research and clinical advances, this conference has become catalytic in translating ideas into…
Find out more »August 2023
The Ehlers-Danlos Society’s 2023 Hybrid Global Learning Conference
2023 Hybrid Global Learning Conference August 2-5, 2023 The Ehlers-Danlos Society is delighted to announce 2023 Global Learning Conference will be a hybrid event, taking place in Dublin, Ireland from August 2-5, 2023. This event is suitable for members of the EDS and HSD community, their families, and caregivers, and health professionals. Registration will open soon, please register your interest to be the first to get your ticket!
Find out more »September 2023
Cure Mito and iCaMP’s Empower&Inspire: Understanding and Accelerating Research for Leigh Syndrome Virtual Conference
Empower&Inspire: Understanding and Accelerating Research for Leigh Syndrome Virtual Conference September 19, 2023 Please join us for a virtual conference focused on Leigh Syndrome. Researchers, industry, patients, and patient families are welcome. To sign up, click here.
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