Events Search and Views Navigation
March 2023
Vestibular Disorders Association’s Life Rebalanced Virtual Conference
VEDA's Annual Virtual Conference: Life Rebalanced March 6-10, 2023 The Vestibular Disorders Association will be hosting its third annual Virtual Vestibular Conference. Vestibular disorders cause a variety of disorienting and debilitating symptoms such as loss of coordination, vertigo, and dizziness, leaving desperate and confused patients searching for answers. Patients will hear from several different experts on topics relevant to the vestibular disorders community, all from the comfort of their homes. Patients will also have the ability to ask specific questions…
Find out more »SynGAP Research Fund’s Harnessing Messenger RNA Metabolism for the Development of Precision Gene Therapy Webinar
SynGAP Research Fund's Harnessing Messenger RNA Metabolism for the Development of Precision Gene Therapy March 16, 2023 Speaker: Jeff Coller, PhD., Johns Hopkins To register, click here.
Find out more »Glut1 Deficiency Foundation’s Virtual Community Gatherings: Parents and Caregivers
Monthly Gatherings: Parent and Caregiver Group March 18, 2023 Led by: Glenna Steele and Rob Rapaport Topics: Social time and support - come with questions, topics to discuss, or stories to share! Special Guest: You! To register, click here.
Find out more »CureGRIN’s 2023 GRI Conference
CureGRIN's GRI Conference 2023 March 23-26, 2023 Join us in Boston for this year's conference. GRI Conference 2023 is a special annual opportunity for clinicians, industry reps, GRI families, and researchers worldwide to converge, network, and collaborate together. We’re making it easier for every participant to find the right session for you. After the keynotes, there will be three streams of sessions offering basic, intermediate, and expert talks. New to GRI science? The basic track will be perfect for you.…
Find out more »SynGAP Research Fund’s Brain Banking and the Hispano-American Brain Bank for Neurodevelopmental Disorders
SynGAP Research Fund's Brain Banking and the Hispano-American Brain Bank for Neurodevelopmental Disorders March 23, 2023 Speaker: Veronica Martinez-Cerdeno, PhD, Professor, Dept of Pathology & Laboratory Medicine, UC Davis To register, click here.
Find out more »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 Center for Chronic Illness Living with Cystinosis Virtual Support Group
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »The International Waldenstrom’s Macroglobulinemia Foundation’s 2023 Educational Forum
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 »The MDS Foundation’s Psychological Well-Being and MDS Webinar
Psychological Well-Being and MDS April 22, 2023 In this webinar, Dr. Hermioni Amonoo will share her tools for taking care of your mental health and emotional well-being following a cancer diagnosis. Speaker: Hermioni L. Amonoo, MD, MPP; Assistant Professor, Psychiatry, Harvard Medical School; Associate Program Director, Psychiatry, Brigham and Women’s Hospital To register, click here.
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
The Center for Chronic Illness Web-Based Rare Chronic Illness Support Group
Web-Based Rare Chronic Illness Support Group A peer support group for those living with rare health challenges led by Kerry Heckman, MSW, LICSW 1st Tuesday of each month, 4-5pm PST / 7-8pm EST To sign up for free, click here.
Find out more »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 »The Center for Chronic Illness Living with Cystinosis Virtual Support Group
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »The Center for Chronic Illness Living with Urea Cycle Disorder Virtual Support Group
Web-Based Living with Urea Cycle Disorder Support Group A supportive, web-based peer support group for those living with urea cycle disorder. facilitated by Annie Moon, LMFT 3rd Wednesday of every other month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »SynGAP Research Fund’s Involvement of the Brain Endothelium in Neurodevelopmental Disorders Webinar
SynGAP Research Fund's Involvement of the Brain Endothelium in Neurodevelopmental Disorders Webinar May 18, 2023 Speaker: Dr. Baptiste Lacoste, Associate Professor, Faculty of Medicine, University of Ottawa To register, click here.
Find out more »Cure CMD’s “The Tenacity of Hope” Virtual Premiere Watch Party
"The Tenacity of Hope" Virtual Premier Watch Party May 20, 2023 The Tenacity of Hope is a documentary film made by Cure CMD, in partnership with Living in the Light, to showcase members of the congenital muscular dystrophy community and their diverse journeys and perspectives. Originally created for our 2022 Patient-Focused Drug Development meeting with the FDA, we encourage you to share this event and this film with family, friends, and colleagues, so that they may gain a better understanding…
Find out more »Terrapinn’s World Orphan Drug Congress USA 2023
World Orphan Drug Congress USA 2023 May 23-25, 2023 The World Orphan Drug Congress brings together leading pharmaceutical and biotech companies, government and regulatory authorities, patient advocacy groups, payers, investors and solution providers. The conference is a place to meet and brainstorm ways to advance orphan drug development and improve access to life-saving therapies. Join us for three days in Washington for the most comprehensive program and inclusive gathering of rare disease stakeholders. To register, click here.
Find out more »June 2023
Cure CMD’s Webinar: Adaptive Series: Accessible Travel
Cure CMD Webinar: Adaptive Series: Accessible Travel June 3, 2023 1 PM ET In this webinar, we’re going to dive deeper into how to travel, where to travel, and most importantly, why travel as a person with a disability. We’ll introduce some fun adaptive excursions to partake in that you didn’t think were possible living with physical limitations. To sign up, click here.
Find out more »The Center for Chronic Illness’ Living with Thyroid Eye Disease Support Group
Web-Based Living with Thyroid Eye Disease Support Group A supportive, web-based peer support group for those living with thyroid eye disease. facilitated by Kerry Heckman, MSW, LICSW 1st Tuesday of every month 6-7 PM PT/9-10 PM ET To sign up for free, click here.
Find out more »The Center for Chronic Illness Web-Based Rare Chronic Illness Support Group
Web-Based Rare Chronic Illness Support Group A peer support group for those living with rare health challenges led by Kerry Heckman, MSW, LICSW 1st Tuesday of each month, 4-5pm PST / 7-8pm EST To sign up for free, click here.
Find out more »The FSHD Society’s 30th Annual FSHD Society International Research Congress
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 »The Center for Chronic Illness Living with Cystinosis Virtual Support Group
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »
