ADPKD Peer Conversations: ADPKD and Your Everyday Life Wednesday, December 8, 2021, 5:30 PM ADPKD Peer Conversations is a series of webinars that provides an interactive experience for participants. In…
ADPKD Peer Conversations: ADPKD and Your Everyday Life Tuesday, December 7, 2021, 5:30 PM ADPKD Peer Conversations is a series of webinars that provides an interactive experience for participants. In…
ADPKD Peer Conversations: ADPKD and Your Everyday Life Monday, December 6, 2021, 6:30 PM ADPKD Peer Conversations is a series of webinars that provides an interactive experience for participants. In…
Digital Community Weekend November 20-21, 2021 Alex, The Leukodystrophy Charity (Alex TLC) provides invaluable support and information to people affected by a genetic leukodystrophy. We are holding a digital community…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
Managing Your PNH Connect. Learn. Take Action. November 9, 2021, 7:30 PM Connecting patients and caregivers in the paroxysmal nocturnal hemoglobinuria (PNH) community. To register, click here. Acknowledgment: This event…
The SYNGAP Research Fund Webinar: Investigating the Functional Single Cell Biology of SYNGAP1 Pathways November 4, 2021 Presented by Professor Michael Courtney To register, click here.
The 2021 Virtual Patient Education Conference October 22-24, 2021 Join the IPPF as we invite leading bullous disease experts to present on research and trends, educate about disease management, and…
The BHD Virtual Symposium October 21-22, 2021 We would be absolutely delighted to welcome patients and families to both the clinical/research sessions as well as the patient-focused sessions. Please make…
The National Organization for Rare Disorders (NORD) held its virtual Rare Diseases and Orphan Products Breakthrough Summit on October 18-19, 2021. Patient Worthy was able to sit in on some…
CAR T Cell Therapy in MDS/AML October 16, 2021 Speaker: David A. Sallman, MD, Moffitt Cancer Center This informational webinar will focus on a treatment approach called CAR T-cell therapy,…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
Moments of Hope Gala October 7, 2021 Celebrate with Mission: Cure as the organization shares progress from this year, recognizes the strength of its resilient patient community, and celebrates hope…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
PAINWeek Conference 2021 September 7-11, 2021 The Cosmopolitan of Las Vegas This conference is the most extensive event focused on pain management. This event invites professionals such as psychologists, social…
September 7, 2021 will be recognized as World Duchenne Awareness Day. This day will be set aside in recognition of awareness surrounding Duchenne muscular dystrophy, a rare and debilitating genetic…
Interpretation of Variants in SYNGAP1 August 19, 2021 with Eduardo Pérez Palma, PhD This webinar will feature a discussion of research related to genetic variants in SYNGAP1. Click here to…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
Outcomes for High-Risk MDS Patients Undergoing Transplant vs. Standard Non-Transplant Therapies August 7, 2021 Speaker: Erica D. Warlick, MD, University of Minnesota Medical Center This free webinar provides an overview…
About a month ago, from June 23-26, The Immune Deficiency Foundation hosted the 2021 Primary Immunodeficiency Conference. The event was the largest gathering of primary immunodeficiency (PI) patients across the…
Que son los sindromes mielodisplasicos? Guillermo Montalbán Bravo, MD, MD Anderson Cancer Center Este seminario les va a proveer como se determina el diagnóstico de MDS, se estará enfocando en…
The 9th International Symposium on Alagille Syndrome "The Alagille Trail" July 16-17, 2021 The Alagille Syndrome Alliance is Discovering New Paths and Leaving No Stone Unturned at their 9th annual…
The 2021 CRN Summer Online Conference "The Beat Goes On" July 15-19, 2021 While this event was originally slated to take place in person in Nashville, TN, in light of…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
July 13th 2021 will be recognized as GIST Awareness Day. This is a day set aside to help spread awareness about gastrointestinal stromal tumor (GIST), a rare disease, among the…
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