Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and…
Join Burning Nights CRPS Support for our next online complex regional pain syndrome (CRPS) support group on Wednesday, February 10, 2021. Burning Nights CRPS Support are still continuing to provide…
2021 IWMF GLOBAL EDUCATIONAL WEBINAR Why Clinical Trials Matter and How to Find the Right One for You February 9th, 2021 Featuring Neena Kennedy, RN, BSN, OCN Clinical trials are…
The month of February is recognized annually as Turner Syndrome Awareness Month, which is intended to help spread awareness about Turner syndrome among the general public and in the medical…
February 2nd is recognized annually as Neuroblastoma Awareness Day, which is intended to help spread knowledge and visibility about neuroblastoma, a rare cancer that mostly affects children, among the general…
The Rare Disease Legislative Advocates' Monthly Webinar January 28, 2021 This months' webinar from the RDLA will focus on the policy priorities of the Everylife Foundation for year 2021, as…
The FH Global Summit Session 4: Lp(a) and Drivers of Inherited Risk January 27, 2021 This session will investigate lipoprotein (a), which has been identified as an independent risk factor…
Patient Worthy is excited to announce that this Saturday a solidarity concert will be held in Noáin in favor of Dravet syndrome. United by the Dravet through Ranchera Music…
On January 21, 2021, the Rare Disease Legislative Advocates (RDLA) hosted an online webinar that focused specifically on the subject of advocating for rare disease health policy at the state…
Rare Disease Legislative Advocates' Special State Advocacy Webinar January 21, 2021 The special webinar from the RDLA will focus on rare disease advocacy at the state level. Attend this session…
NORD's COVID-19 Vaccines Update Webinar FDA and CDC Leaders Address the Rare Disease Community January 15, 2021 NORD, in collaboration with the Muscular Dystrophy Association, Cystic Fibrosis Foundation, and The…
Join Burning Nights CRPS Support for our next online complex regional pain syndrome (CRPS) support group on Wednesday, January 13, 2021. Burning Nights CRPS Support are still continuing to provide…
Pediatric Concerns in EDS and HSD: Exploring The Impact of Misdiagnosis January 10, 2021 Virtual Webinar Event Hear from members of the Ehlers-Danlo syndrome community who have been affected by…
The Rare Disease Legislative Advocates (RDLA) held a webinar on December 3rd, 2020. This event focused on the organization's goal of passing Cures 2.0, a bill that would help further…
The Reuters Pharma & Patient USA 2020 virtual conference included a number of shorter presentations that focused on specific approaches to help drug companies better meet the needs of patients.…
Managing Your Atypical HUS Connect. Learn. Take Action. Live Webinar Monday, December 14th, 2020 Alexion invites patients and families living with atypical hemolytic uremic syndrome (HUS) to an educational program…
Join Super T's Mast Cell Foundation for... Super T's Gift Card B-I-N-G-O Saturday, December 12, 2020 Join in this virtual game of bingo to help fundraiser for the organization and…
Mesentech and the Importance of Bone Health December 10th, 2020 at 4:30 PM ET CureDuchenne, a nonprofit focused on Duchenne muscular dystrophy (DMD), has officially invested in Mesentech, Inc., through…
Managing Your PNH Connect. Learn. Take Action. Live Webinar Wednesday, December 9, 2020 Alexion invites patients, families, and caregivers living with paroxysmal nocturnal hemoglobinuria (PNH) to an educational program for…
Unmask HPP Webinar Educational Event December 7th, 2020 at 6:00 pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment…
On December 9th, 2020, a special edition of "Behind the Mystery: Rare and Genetic" will air on Lifetime TV as part of the acclaimed morning program The Balancing Act. It…
The MS MindShift initiative offers free educational online events that focus on helping people who live with multiple sclerosis (MS) better understand the critical role that healthy choices can have…
Learn About Primary Biliary Cholangitis Join us for an online event about primary biliary cholangitis (PBC). Don't miss out on a live Q&A session with a Nurse Educator* and an…
The MS MindShift initiative offers free educational online events that focus on helping people who live with multiple sclerosis (MS) better understand the critical role that healthy choices can have…
Unmask HPP Webinar Educational Event December 1st, 2020 at 6:30 pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment…
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