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July 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 »Cystinosis Research Network’s 2023 CRN Conference
2023 CRN Conference July 13-15, 2023 After four years apart, we welcome you to join us in Nashville, Tennesse, lovingly known as “Music City.” In addition to being surrounded by live music, Nashville is buzzing with creativity, an incredible food scene and cultural landmarks. The Family Conference kicks off on Thursday evening, July 13, with a Welcome reception and dinner. Friday and Saturday are filled with sessions on cystinosis research, open panel discussions and opportunities to connect with both medical…
Find out more »Chelsea’s Hope’s 2023 Lafora Disease Science Symposium
2023 Lafora Disease Science Symposium Registration October 9-10, 2023 Bologna, Italy Lafora disease researchers and clinicians at Instituto delle Scienze Neurologiche di Bologna (ISNB) IRCCS will host the 8th Annual Lafora Disease Science Symposium in Bologna, Italy from October 9-10, 2023. Chelsea’s Hope is hosting registration. Please register individually to attend the in-person Symposium. If you can’t make it in person, we encourage you to register and indicate your interest in receiving the recordings after the conference. To sign up, click here.
Find out more »Uplifting Athletes’ Minnesota Twins at Seattle Mariners Game Day Uplifting Experience
Minnesota Twins at Seattle Mariners Game Day Uplifting Experience July 17, 2023 T-Mobile Park, Seattle, WA Uplifting Athletes is excited to invite rare individuals and families to join us for a game day at T-Mobile Park in Seattle, WA on Monday, July 17 at 4:40pm PDT. Register for free and cheer on the Minnesota Twins as they go head-to-head against the Seattle Mariners! This Uplifting Experience will include game tickets, t-shirts, food, beverages, and much more. This event is inclusive and…
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 »Cystic Fibrosis Research Institute’s 36th Hybrid National CF Education Conference
CFRI's 35th Virtual National CF Education Conference: Focus on the Future July 28-30, 2023 CFRI’s National CF Education Conference will be held in-person and virtually. The Conference kicks off Friday, July 28, with an all-day Research Track, and opening reception. Speakers on Saturday and Sunday will present on topics including phage therapy, stem cell research, mRNA therapy, and parenting with CF. Exhibitors, the annual awards dinner and dance party make this a full weekend of community connection. Virtual attendees can…
Find out more »The MDS Foundation’s Updates from the 17th International Congress on MDS: Promising Treatment Advances
Updates from the 17th International Congress on MDS: Promising Treatment Advances July 29, 2023 In this webinar, Dr. Moshe Mittelman will provide an overview of the most promising research presented at the 2023 17th International Congress on Myelodysplastic Syndromes impacting MDS diagnosis, prognosis, and management. After the presentation, there will be a Q & A session for participants. Speaker: Moshe Mittelman MD; Professor of Medicine and Hematology, Tel Aviv Sourasky Medical Center To register, click here.
Find out more »August 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 »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 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 »Uplifting Athletes’ 10,000 Mile Challenge
Uplifting Athletes 10,000 Mile Challenge August 10-19, 2023 Are you an avid runner, swimmer, or cyclist? Do you roll on wheels of any kind or are a casual walker? Whether you're an Olympic athlete or just getting your steps in during your jog to catch the subway—you can help us put our mission into motion! We have 10 days to create a brighter future for those facing a rare diagnosis. Join us as we reach 10,000 miles of movement to…
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 MDS Foundation’s CHIP and CCUS, Precursors to MDS Webinar
CHIP and CCUS, Precursors to MDS August 19, 2023 There have been marked developments in the understanding of clonal hematopoiesis based on findings of somatic mutations in genes known to be associated with MDS. This has led to newer terms to describe precursor states to MDS, such as clonal hematopoiesis of indeterminate potential (CHIP) and clonal cytopenia of undetermined significance (CCUS). This webinar will provide an overview of these conditions which may allow earlier diagnosis, modify surveillance for MDS, and…
Find out more »Vestibular Disorders Association’s An Evening for a Life Rebalanced Virtual Gala
An Evening for a Life Rebalanced Virtual Fundraising Gala August 24, 2023, 8 PM You are invited to come together with the vestibular community and show your support by attending the "Evening for a Life Rebalanced" virtual fundraising gala. You know that simple tasks become obstacles for those living with vestibular dysfunction, leaving them isolated and unheard due to the invisible nature of dizziness. By participating in this gala, you offer them the much-needed lifeline of community and direct support.…
Find out more »September 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 »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 »Cystic Fibrosis Research Institute’s Adults with CF Who Received a Late Diagnosis Online Support Group
Adults with CF Who Received a Late Diagnosis Online Support Group September 6, 2023 at 8 PM Online support group for adults with CF who received a late diagnosis. Facilitated by Laura Mentch, EdM, and/or Jean Hanley, MD. To sign up and learn more, click here.
Find out more »FD/MAS Alliance’s FD/MAS Community Conference 2023
FD/MAS Community Conference 2023: Facing the Future - Together September 8-10, 2023 We proudly invite you to the FD/MAS Community Conference: a weekend of education, connection, and collaborative research. The FD/MAS Alliance Community Conference aims to combine patient-centered science and real-world strategies for patients and families living with fibrous dysplasia, McCune-Albright syndrome (FD/MAS). This meeting coincides with the inaugural meeting of the newly incorporated International Consortium for FD/MAS (ICFDMAS), a consortium of research and patient support groups from 13 countries. The FD/MAS…
Find out more »The MDS Foundation’s MDS Patient and Family/Caregiver Forum
MDS Patient & Family/Caregiver Forum September 9, 2023 Los Angeles, CA Many patients and caregivers have never met another person diagnosed with MDS until they connected with them at one of our forums. If you've never attended one, you won't want to miss this opportunity to meet others and to learn more about MDS, current treatments, and emerging therapies from leading experts. Not only will you find answers, support, and hope for MDS, but you will learn tips and strategies…
Find out more »Uplifting Athletes’ Oakland A’s Game Day Uplifting Experience
Oakland A's Game Day Uplifting Experience September 15, 2023 Alameda County Coliseum, Oakland, CA Uplifting Athletes is excited to invite rare individuals and families to join us for a memorable gameday with the Oakland Athletics in Oakland, CA on Friday, September 15 at 3:40pm PST. Register for free and cheer on the A’s as they go head-to-head against the San Diego Padres! This Uplifting Experience will include parking, suite access including food, beverages, t-shirts, and much more. This event is…
Find out more »HCU Network America’s Classical HCU Patient, Parent, Caregiver Online Meetup
Classical HCU Patient, Parent, Caregiver Online Meetup September 17, 2023 at 4 PM We will start the meeting with introductions and conversation together, then move into breakouts. There will be a breakout for Parents/Caregivers and Patients. Your facilitators: Diagnosed at the age of 10 with Classical HCU, Danae' struggled with the low-protein diet and formula. At 24 years old she suffered a blood clot, which was the cataylst that she needed to get back on track and seek community support.…
Find out more »Cure Mito and iCaMP’s Empower and 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.
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.
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