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Events for February 24, 2021

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Rare Liver Diseases Month

February 1 - February 28

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 >

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NORD Running for Rare Program

February 1 - December 31

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 >

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Ongoing

Zebra 5K Virtual Run

February 1 @ 8:00 am - February 27 @ 5:00 pm

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 >

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Rare Disease Day 2021 at Vanessa Research

February 22 @ 8:00 am - February 28 @ 11:30 pm

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 >

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Innovation in Rare Disease: Making Progress with Cell & Gene Therapies

February 23 @ 9:00 am - February 25 @ 10:15 am

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 >

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RARE DISEASE DAY EVENT 2021: RARE COMMUNITY

February 23 @ 5:00 pm - February 27 @ 5:00 pm

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 >

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Virtual Rare Disease Symposium

February 23 @ 5:00 pm - February 27 @ 1:00 pm
Free

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 >

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10:00 am

The Orphan Disease Center 10th Anniversary Virtual Symposium: A New Era of Rare Disease Diagnostics and Therapeutics

February 24 @ 10:00 am - February 25 @ 3:00 pm

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 >

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12:00 pm

Colorado Rare Disease Day Virtual Event

February 24 @ 12:00 pm - 1:30 pm

Colorado Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Colorado 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 >

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Nevada Rare Disease Day Virtual Event

February 24 @ 12:00 pm - 1:30 pm

Nevada Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Nevada legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on the Nevada Rare Disease Advisory Council (RDAC) and Read more >

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Massachusetts Rare Disease Day Virtual Event

February 24 @ 12:00 pm - 1:00 pm

Massachusetts Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Massachusetts legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on the Massachusetts Rare Disease Advisory Council (RDAC) and Read more >

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2:00 pm

CurePSP Webinar – Ask The Doctor with Robert Hand, DPT

February 24 @ 2:00 pm - 3:00 pm

In this webinar, Robert Hand, DPT, will present physical therapy techniques for PSP, CBD, and MSA patients. This program is designed to connect patients and family members to specialized physical therapy techniques that will evaluate and treat individuals with atypical parkinsonisms and other prime of life diseases. Attendees will feel more empowered to advocate for Read more >

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3:00 pm

New Hampshire Rare Disease Day Virtual Event

February 24 @ 3:00 pm - 4:30 pm

New Hampshire Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate New Hampshire legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on the New Hampshire Rare Disease Advisory Read more >

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4:00 pm

Arizona Rare Disease Day Virtual Event

February 24 @ 4:00 pm - 5:00 pm

Arizona Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Arizona 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 >

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5:30 pm

Virginia Rare Disease Day Virtual Event

February 24 @ 5:30 pm - 7:00 pm

Virginia Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Virginia legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on where Virginia is currently in the legislative process Read more >

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7:00 pm

Kansas Rare Disease Day Virtual Event

February 24 @ 7:00 pm - 8:30 pm

Kansas Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Kansas 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 >

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Indiana Rare Disease Day Virtual Event

February 24 @ 7:00 pm - 8:30 pm

Indiana Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Indiana 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 >

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