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October 2022
HCU Network America’s Cobalamin Disorders Virtual Meet-Up
Cobalamin Disorders with Homocystinuria Meetup October 23, 2022 Online meet-ups are an opportunity to connect with patients and caregivers impacted by cobalamin disorders with elevations of homocysteine to one another virtually. If you are a medical professional or industry representative looking to attend, please contact HCU Network America to seek advanced approval. To sign up, click here.
Find out more »November 2022
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, visit www.supportgroupscentral.com/CCI
Find out more »The MDS Foundation’s MDS Patient and Family/Caregiver Forum
MDS Patient & Family/Caregiver Forum November 5, 2022 Presenters: Stephen Chung, MD Yazan Madanat, MD Madhuri Vusirikala, MD Amber Thomassen, AGPCNP-BC, AOCNP Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver this event will give you the opportunity to learn from experts about treatment therapies and strategies for patients and caregivers LIVING with MDS. To register for free, click here.
Find out more »MS Views and News’ 13th Annual MS Symposium – A Day of Virtual Learning
The 13th Annual MS Symposium: A Day of Virtual Learning November 5, 2022 The Annual MS Symposium is a day of learning, making connections, and staying up to date for people affected by Multiple Sclerosis. Join the largest MS educational event of the year live online To learn more and get signed up, click here.
Find out more »The Center for Chronic Illness WA State Rare Chronic Illness Support Group
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!
Find out more »SynGAP Research Fund’s SynGAP Soiree: Sparks of Hope
The SynGAP Research Fund Presents: SynGAP Soiree: Sparks of Hope November 12, 2022 We are thrilled to announce the SYNGAP SOIREE • SPARKS OF HOPE fundraising gala. This event will bring together groups and individuals interested in furthering the mission of SynGAP Research Fund (SRF) and will be an opportunity to educate the community about SYNGAP1, a rare neurological disorder. Please join us for a special evening featuring an auction, dining, and entertainment. To register for this event, click here.
Find out more »The Center for Chronic Illness: Parenting Chronic Illness Webinar
Parenting Chronic Illness Webinar A web-based peer support group for parents of children living with health challenges led by Natalie Hopkins, MSW 2nd Monday of each month from 4-5pm This program is currently meeting virtually. To sign up, visit www.supportgroupscentral.com/CCI
Find out more »HCU Network America’s Rare X HCU Data Collection Program Facebook Live Chat: Oral Health Survey Webinar
Rare X HCU Data Collection Program Facebook Live Chat: Oral Health Survey Webinar November 17, 2022 From short roots to crowding of teeth, patients with various types of homocystinuria experience a wide range of oral issues. While some of these dental issues are better documented, other aspects aren't. Come join two adults with classical HCU, Danae' and Brooklyn, along with parent of a little boy with Cobalamin G, Ashlee as we dive into their experiences managing the oral health issues…
Find out more »World Alliance of Pituitary Organizations’ Webinar: Labour And a Chronic Illness
Online Webinar: Labour And a Chronic Illness With Johan Beun, Speaker November 17, 2022 Johan served till 2009 as Ambassador for NICTIZ and was international advisor to various countries, ministries and organizations to support them in their processes around the design and implementation of the EPR (=electronic patient record), one of the instruments for better patient safety. He was an advisor for the innovation processes in the NHS-Wales. He cooperated with the board of Kaiser Permanente California, USA as one…
Find out more »The MDS Foundation’s MDS Patient and Family/Caregiver Forum
MDS Patient & Family/Caregiver Forum November 19, 2022 Presenters: Jeffrey J. Pu, MD, PhD, The University of Arizona Cancer Center Laura M. F. McPheeters, FNP-C, The University of Arizona Cancer Center Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver this event will give you the opportunity to learn from experts about treatment therapies and strategies for patients and caregivers LIVING with MDS. To register for free, click here.
Find out more »Cambridge Rare Disease Network’s RAREfest22
The Cambridge Rare Disease Network presents RARE Fest 2022 Engage.Educate.Empower. November 25-26, 2022 WE’RE BACK IN PERSON FOR RAREFEST22!! For the experts and the curious of all ages. For everyone. For free! RAREfest22 is a public-facing, 2-day rare disease inspired festival with interactive exhibits, talks, film and art showcasing ground-breaking science, visionary technology and pioneering organisations, improving lives and bringing hope to those affected by rare conditions. To register, click here.
Find out more »December 2022
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, visit www.supportgroupscentral.com/CCI
Find out more »The Center for Chronic Illness WA State Rare Chronic Illness Support Group
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!
Find out more »January 2023
HCU Network America’s Classical HCU Patient Virtual Meet-Up
Classical HCU Patient Virtual Meet-Up February 5, 2023 Meetups are an opportunity to connect patients and caregivers impacted by Classical Homocystinuria to one another virtually. About this event Struggling with the diet and formula? Feeling like you are in a food rut, don’t like your formula, or you are having trouble getting it covered? Having health issues, you aren’t sure are HCU related, or just part of being an adult? Come join us for our Classical HCU Community Meetup. Click…
Find out more »HCU Network America’s Classical HCU Parent-Caregiver Online Meetup
Classical HCU Parent-Caregiver Online Meetup March 4, 2023 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether your child is 5 months old or 25 years old, parents, grandparents, and caregivers of those with HCU need support! Come join us for networking, tips, tricks, and conversation. To sign up, click here.
Find out more »February 2023
BHD Foundation and Myrovlytis Trust’s Meet the Experts: Lung Online Webinar
Meet the Experts: Lung February 1, 2023 We are delighted to announce Professor Lisa Henske will be our next expert discussing her work on BHD and lung cysts. Lisa is a medical oncologist at the Brigham and Women’s Hospital and Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. She provides clinical care for individuals with kidney and lung manifestations of BHD and is the Director of the Center for LAM Research and Clinical Care. Her research laboratory…
Find out more »International Waldenstrom’s Macroglobulinemia Foundation’s WM People of Color Support Group
WM People of Color Support Group February 3, 2023 at 1:00 PM ET The WM People of Color Discussion Group will be having their next meeting for patients and caregivers in February. Attendees will join leader Paula on Zoom for a session including two guest physicians, Dr. Susan Slager (Mayo Clinic) and Dr. Mary McMaster (NIH), which will last approximately one hour. To join the mailing list for this group, contact [email protected]
Find out more »FSHD Society’s Feeling Fit With FSHD: Postural Changes
Feeling Fit With FSHD: Postural Changes February 9, 2023 Join physiotherapist Ulrike Uta of the Muscular Dystrophy Support Centre (MD Support Centre) in Coventry, UK, for today’s session. Postural changes in FSHD are expected and are caused by muscle weakness and compensatory mechanisms of our body to stay up against gravity and to complete tasks. These postural changes can lead to soft tissue tightness or shortness, which then cause additional problems, such as discomfort or pain, cramps, headaches, shoulder, neck…
Find out more »FSHD Society’s Wellness Hour – Towards Hope
Wellness Hour - Towards Hope February 13, 2023 This month we will be joined by crisis counselors Kylee Helmke and Andrea Morales to discuss mental health issues that affect the FSHD community. Depression is not uncommon, and too many families have been devastated by suicide. This is a safe, confidential space to share your experiences. We will discuss what we can do as a community and individuals to help loved ones in crisis. What are warning signs to be aware…
Find out more »The FSHD Society’s FSHD University: The FORTITUDE Trial
FSHD University: The FORTITUDE Trial February 14, 2023 Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial in FSHD of the novel compound AOC 1020. This will be the first human trial of an FSHD disease-modifying drug based on an siRNA targeting DUX4 mRNA. We'll learn more about how the drug works, the design of the trial, and where and when patients can expect to enroll in it. To sign up, click here.
Find out more »Glut1 Deficiency Foundation’s Virtual Community Gatherings: Parents and Caregivers
Monthly Gatherings: Parent and Caregiver Group February 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 »The FSHD Society’s Early-Onset Parent Roundtable
Early-Onset Parent Roundtable February 21, 2023 Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. We will have plenty of time for parents to exchange ideas and ask/answer questions from other parents. We’d love your thoughts and participation. Please join us and bring your ideas, questions, answers, and tips and tricks.…
Find out more »The FSHD Society’s Feeling Fit with FSHD: Postural Changes, Part 2
Feeling Fit with FSHD: Postural Changes, Part 2 February 23, 2023 Ulrike Uta will join us to discuss the experiences of the February 9 exercise class and answering questions. We can revisit some exercises to discuss in more detail. We all move in habitual, learned pattern. Normally, we are not aware of our movement pattern and changing them can be challenging. Either because we can’t feel how we can activate different muscles or because muscles are too weak or inactive…
Find out more »The FSHD Society’s FSHD University: Dr. Rita Perlingeiro on Stem Cell Research and FSHD
FSHD University: Dr. Rita Perlingeiro on Stem Cell Research and FSHD February 23, 2023 Our webinar speaker is Dr. Rita Perlingeiro, Associate Professor of Medicine within the Lillehei Heart Institute at the University of Minnesota. Her primary research interests include understanding the molecular mechanisms controlling lineage-specific differentiation of pluripotent stem cells, and applying this information to efficiently generate tissue-specific stem/progenitor cells endowed with in vivo regenerative potential. Her work has potential applications in muscular dystrophy research and future therapies. Dr.…
Find out more »EveryLife Foundation for Rare Diseases Rare Disease Week on Capitol Hill
Rare Disease Week on Capitol Hill February 28-March 2, 2023 NOTE: Rare Disease Week on Capitol Hill 2023 is an in-person event with some events accessible via livestream. Meetings with Members of Congress are in-person only. Now in its 12th year, Rare Disease Week on Capitol Hill empowers and inspires hundreds of advocates each year. The connections you make during the week will impact rare disease patients for generations to come. Hosted by the Rare Disease Legislative Advocates (a program…
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