CureDuchenne's Cares Sessions: Helping Connect and Inform Patient Families August 22nd, 2020, 6:30 pm The Sessions program from CureDuchenne is geared specifically towards patients and their families as well as…
More Than Scleroderma: A Live Educational Event August 19, 2020 at 5:30 PM ET Join us for a webinar about scleroderma Because scleroderma is so rare, it can be hard…
The Vestibular Disorders Association has announced its first ever Virtual Vestibular Conference. The virtual event is scheduled from September 14-18 2020 and is being held as part of Balance Awareness…
More Than Scleroderma: A Live Educational Event August 13, 2020 at 2:00 PM ET Join us for a webinar about scleroderma Because scleroderma is so rare, it can be hard…
CFRI Presents: The 33rd Annual National CF Education Conference: Partners in Progress ~ An Exciting Virtual Experience In light of the ongoing coronavirus/COVID-19 pandemic, CFRI's annual education conference will be…
The 20th Annual ITP Conference August 1-2, 2020 NOTE: In light of the ongoing coronavirus/COVID-19 pandemic, this year's event will be held entirely online. The ITP conference is a unique…
RARE on the Road: a Rare Disease Leadership Tour June 27th, 2020 New Orleans, LA The Rare Disease Leadership Tour is designed to give insights and education to rare disease…
The 2020 Virtual Family Conference June 25-27, 2020 This event features live streamed webinars featuring leukodystrophy researchers and relevant content for leukodystrophy patients and their families. The conference will also…
RARE on the Road: a Virtual Rare Disease Leadership Tour June 23rd-24th, 2020 The Virtual Rare Disease Leadership Tour is designed to give insights and education to rare disease advocates,…
Speakers: Leah Weisbecker, Living with HAE & Marc Riedl Join this live presentation featuring a physician who treats HAE and an HAE patient advocate. You will also have the opportunity…
The World Federation of Hemophilia's Virtual Summit: Connecting the Global Bleeding Disorders Community June 15-19, 2020 In light of the cancellation of WFH's World Summit due to the ongoing coronavirus/COVID-19…
The RARE Drug Development Symposium June 11-12, 2020 NOTE: Due to the ongoing coronavirus/COVID-19 pandemic, this event is now virtual. The RARE Drug Development Symposium is intended as an event…
Stand With HPP Live Webinar June 9th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP). Ask questions & gather information…
Speakers: Viola Zhu, MD, PhD, University of California Irvine & Larissa, Patient Ambassador Join us to learn more about ALK+ non-small cell lung cancer (NSCLC) and ALUNBRIG (brigatinib) as a…
HDSA 35 New Orleans: The 35th Annual HDSA Convention June 4th-6th, 2020 The 35th annual convention is tailored for Huntington's disease patients and their families. Join the HDSA for three…
CureDuchenne's Cares Sessions: Helping Connect and Inform Patient Families May 30th, 2020, 6:30 pm The Sessions program from CureDuchenne is geared specifically towards patients and their families as well as…
RARE on the Road: a Rare Disease Leadership Tour March 28th, 2020 Minneapolis, MN The Rare Disease Leadership Tour is designed to give insights and education to rare disease advocates,…
Stand With HPP Live Webinar May 28th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP). Ask questions & gather information…
Running Wild for a Cure 5K Run-Walk Sunday, May 17th, 2020 This goal of this race is to raise funds for the Superficial Siderosis Research Alliance, a nonprofit organization dedicated…
CureDuchenne Cares Workshops: Hear The Latest From Experts May 16th, 2020, 8:00 am The Workshops program from CureDuchenne are day-long educational events that are oriented towards caregivers and Duchenne muscular…
Speakers: Tarek Mekhail, MD, Advent Health Cancer Institute & Larissa, Patient Ambassador Join us to learn more about ALK+ non-small cell lung cancer (NSCLC) and ALUNBRIG (brigatinib) as a treatment…
Speakers: Jason Meyer, Living with HAE & Raffi Tachdijan Join this live presentation featuring a physician who treats HAE and an HAE patient advocate. You will also have the opportunity…
Stand With HPP Live Webinar May 6th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP). Ask questions & gather information…
CureDuchenne Cares Workshops: Hear The Latest From Experts May 2nd, 2020, 8:00 am The Workshops program from CureDuchenne are day-long educational events that are oriented towards caregivers and Duchenne muscular…
Speakers: Shayma Kazmi, MD, RPh Cancer Treatment Center of America & Danielle, Patient Ambassador Join us to learn more about ALK+ non-small cell lung cancer (NSCLC) and ALUNBRIG (brigatinib) as…
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