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October 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 October 4, 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 »The MDS Foundation’s MDS Patient and Family/Caregiver Forum
MDS Patient & Family/Caregiver Forum October 7, 2023 Philadelphia, PA 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 from…
Find out more »The MDS Foundation’s MDS Patient and Family/Caregiver Forum
MDS Patient & Family/Caregiver Forum October 14, 2023 Nashville, TN 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 from…
Find out more »National Organization for Rare Disorders’ 2023 NORD Breakthrough Summit
2023 NORD Breakthrough Summit October 16-17, 2023 Registration is now open for NORD's Rare Diseases and Orphan Products Breakthrough Summit! On October 16-17 at the Marriott Marquis in Washington, DC, join hundreds of rare disease advocates, experts, and stakeholders from around the world to tackle the most pressing issues facing the rare disease community. This year's agenda features topics including the future of gene editing, the impact of the Inflation Reduction Act, harnessing the power of AI for diagnosis, diversity and equity in rare diseases, and so…
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 »November 2023
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 November 1, 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 »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 MDS Foundation’s MDS/MPN Overlap Syndrome Webinar
MDS/MPN Overlap Syndrome Webinar November 4, 2023 In this webinar, Dr. Angela Fleischman will explain myelodysplastic syndromes/myeloproliferative neoplasms overlap syndrome with an overview of the different features between MDS and MPN and their overlap and what these conditions mean for patients. Peter Löffelhardt will provide an overview of the Global International MPN Scientific Foundation. Attendees may listen to the simultaneous translation into Spanish of this webinar presented in English. After the presentation, there will be a live Q & A…
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 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 »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 »December 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 December 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 »The MDS Foundation’s MDS Foundation Breakfast Symposium
MDS Foundation Breakfast Symposium December 8, 2023 In conjunction with the 65th American Society of Hematology Annual Meeting and Exposition The 2023 Symposium will focus on recent advances in the diagnosis, classification and management of patients with myelodysplastic syndromes (MDS). The program combines recent data, application of new tools and evidence on current practice with information that might be applied in the future. To sign up, click here.
Find out more »CSNK2A1 Foundation’s Research Roadmap Webinar
CSNK2A1 Foundation Research Roadmap Webinar December 10, 2023 Join us for an exciting virtual event on Sunday, December 10th, as our esteemed Science Program Director, Dr. Gabrielle Rushing, presents a special webinar on our OCNDS Research Roadmap. Get ready to hear about our incredible journey from where we started, our remarkable progress, and the promising path ahead. This webinar promises to be an insightful and inspiring session for all those passionate about advancing research and finding cures. Learn about our…
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 »January 2024
Cell & Gene Therapy Insights’ The Role of AI in Predicting Stem Cell Donor Availability Webinar
The Role of AI in Predicting Stem Cell Donor Availability Webinar January 31, 2024 The success of unrelated donor stem cell transplants depends on not only finding genetically matched donors but also donor availability. On average, 50% of potential donors in the National Marrow Donor Program database are unavailable for a variety of reasons after initially matching a patient, with significant variations in availability among subgroups (e.g., by race or age). Several studies have established univariate donor characteristics associated with…
Find out more »February 2024
CureDuchenne’s Cares Workshop: Atlanta, GA
CureDuchenne Cares Workshop February 10, 2024 Atlanta, GA A FULL DAY EVENT FOCUSED ON IMPROVING THE QUALITY OF LIFE FOR INDIVIDUALS WITH DUCHENNE AND BECKER. CureDuchenne Cares is an interactive education and outreach program designed to provide the community with information, resources and best practices for managing the challenges of Duchenne and Becker to help improve overall quality of life. These one-day events provide an immersive education experience, where clinicians and experts share their wealth of Duchenne knowledge as well…
Find out more »European Reference Networks for Rare Neurological Diseases’ Newborn screening in leukodystrophies by Lucia Laugwitz
'Newborn screening in leukodystrophies' by Lucia Laugwitz February 20, 2024 Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN). To register, click here.
Find out more »CureDuchenne’s Cares Dinner Session: Charlotte, NC
CureDuchenne Cares Dinner Session February 24, 2024 Charlotte, NC A NEIGHBORHOOD DINNER FOR CAREGIVERS AFFECTED BY DUCHENNE AND BECKER JOIN US FOR A CASUAL THREE-HOUR DINNER ON SATURDAY EVENING TO TALK ABOUT YOUR FAMILY’S STORY, HEALTH AND WELLNESS, COPING, AND OVERALL DISEASE MANAGEMENT. CureDuchenne Cares is an interactive education and outreach program designed to provide the community with information, resources and best practices for managing the challenges of Duchenne and Becker to help improve overall quality of life. Dinner is…
Find out more »March 2024
Amyloidosis Foundation’s 2024 Light the Night for Amyloidosis Month
2024 Light the Night for Amyloidosis Month March 1-31, 2024 "Light the Night for Amyloidosis" is an awareness campaign created to draw attention to amyloidosis symptoms, diagnosis, treatment, and hopefully a cure! Since 'Amyloidosis Awareness Month' occurs in March, we are asking everyone to light up their porch/entryway with red bulbs in March. We have also contacted many US landmarks and businesses to do the same in March 2023. Below is a list of the approved requests, along with the date…
Find out more »Amyloidosis Foundation’s 2nd Annual Bradley Z. Naifeh Amyloidosis Conference
2nd Annual Bradley Z. Naifeh Amyloidosis Conference March 2, 2024 Houston, TX Presented by the Bradley Z. Naifeh Amyloidosis Clinical Research and Treatment Program at Houston Methodist J.C. Walter Jr. Transplant Center. Amyloidosis is an underrecognized condition because it has historically been misconceived to be a rare disease and presents in a myriad of clinical situations in a subtle manner. Recent advances in therapeutics have made it imperative that this condition is recognized and categorized appropriately in a timely manner…
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