In their mission to improve the lives of individuals and families impacted by liver disease, Global Liver Institute (GLI) is excited to announce February 2021 as the first annual Rare Liver Diseases Month. This year’s inaugural campaign, themed #RareAware, will feature communication, education, and advocacy efforts focused on rare liver diseases throughout the month of Read more >
Find out more »Through the satellite program, runners from across the globe are invited to join NORD’s Charity Running Team in any race of their choosing – marathon, 5K, cycling, walking, climbing, or even an Iron Man, all while raising funds for rare diseases. Runners can choose to participate in an event solo or create a team. Based Read more >
Find out more »Rare Disease Day may be the 28th, but we are celebrating all month. Join New Hope Run Club and Avery's Hope. Run, walk, roll or stroll anywhere in the world, whether you are a local friend or a friend from far away! #showyourstripes The Zebra 5K specifically benefits the St. Jude Clinical Nutrition Department who Read more >
Find out more »We are proud to announce that we are an official Friend of Rare Disease Day. ❤ Rare Disease Day aims to raise awareness for rare diseases around the world. The long-term goal over the next decade is to improve access to treatment and medical representation for individuals with rare diseases and their families. Follow along Read more >
Find out more »This Rare Disease Day, Syneos Health continues the drive to raise awareness of rare diseases and their impact on patients’ lives – and to shine a light on the opportunities for cell and gene therapies in treating these disorders. Join us for an inspiring program that brings together – over three days – patients and Read more >
Find out more »Calvin University, Michigan State University College of Human Medicine, and Spectrum Health Helen DeVos Children’s Hospital are pleased to announce our virtual Rare Disease Day 2021 event, February 23-27. This free, virtual event serves to unite patients, caregivers and families, medical professionals, researchers, advocates, and students around the common goal of understanding what it means Read more >
Find out more »Join us online for a week of free events revolving around rare diseases and the rare disease community. Each evening of the week will feature themed sessions on topics related to advocacy, education, and community. On Saturday morning there will be multiple sessions as well as opportunities to explores organizations that support the rare disease Read more >
Find out more »Penn’s Orphan Disease Center (ODC) is the first of its kind, a program dedicated to identifying promising therapies for oft-overlooked disorders and providing access to those therapies for patients of all populations. Led by world-renowned gene therapy pioneer Jim Wilson, the ODC has a track record of accelerating progress across a number of arenas, including Read more >
Find out more »Hello we are AIIAO (Italian Association of Cancer Area Nurses), on the 28th we will make posts on our social networks to raise awareness of rare diseases and tumors. celebRARE significa + ricerca + assistenza + risorse per farmaci orfani
Find out more »Wisconsin Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Wisconsin legislators and the general public on the challenges faced by rare disease patients and their families. We will explore how the formation of a Rare Disease Advisory Council (RDAC) could Read more >
Find out more »Oklahoma Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Oklahoma legislators and the general public on the challenges faced by rare disease patients and their families. We will explore how the formation of a Rare Disease Advisory Council (RDAC) could Read more >
Find out more »People with rare diseases often have limited access to diagnosis, treatment and care. The disparities can be even greater for people from underrepresented racial, ethnic or other minority groups. During this special Rare Disease Day event, two patient organization leaders, a medical professional and a medical student will discuss current initiatives and possible approaches to advancing health equity. Read more >
Find out more »Join Students for Rare at NC State University, Wake Forest Medical school, UNC-Chapel Hill and Tompkins High school on February 25, 2021 at 6pm EST for our Rare Disease Day virtual event. We have speakers from all three universities sharing their expertise on rare disorders. What is RDD? Rare Disease Day is a day solely Read more >
Find out more »New York Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate New York legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on the New York Rare Disease Advisory Read more >
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