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Events for February 26, 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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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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8:00 am

MSL3 Syndrome virtual Meet and Greet

February 26 @ 8:00 am - 10:00 am
Unnamed Venue Dallas, TX United States + Google Map

Our first ever virtual meetup for the families of ultra-rare disorder, MSL3 Syndrome. Accessible through our private support group which is linked to our information page on Facebook. https://fb.me/e/3LX4D1CH5

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9:00 am

South Carolina Rare Disease Day Virtual Event

February 26 @ 9:00 am - 10:00 am

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

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Connecticut Rare Disease Day Virtual Event

February 26 @ 9:00 am - 10:30 am

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

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10:00 am

Florida Rare Disease Day Virtual Event

February 26 @ 10:00 am - 11:00 am

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

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2021 Florida Virtual Rare Disease Day Online Event

February 26 @ 10:00 am - 11:30 am

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

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10:30 am

University of Michigan Virtual Rare Disease Day Event

February 26 @ 10:30 am - 2:30 pm

We invite you to join Michigan Medicine and the University of Michigan NORD Students for Rare in a 3-day virtual event recognizing Rare Disease Day. The event will highlight patient stories, caregiver stories, and research findings in the fields of Metabolism and Immunology. We hope to see you there!

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University of Michigan Virtual Rare Disease Day Event

February 26 @ 10:30 am - 2:30 pm

We invite you to join Michigan Medicine and the University of Michigan NORD Students for Rare in a 3-day virtual event recognizing Rare Disease Day. The event will highlight patient stories, caregiver stories, and research findings in the fields of Metabolism and Immunology. Please register at the link below. We hope to see you there!

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11:00 am

Telehealth in Rare Disease Clinical Practice and Research: The Silver Lining Now and Beyond COVID-19

February 26 @ 11:00 am - 2:30 pm

Ninth annual Rare Disease Day hosted at the University of Minnesota. Co-sponsored by the Center for Orphan Drug Research and Stem Cell Institute.

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Lunch and Learn at Atlanta Bread Woodstock

February 26 @ 11:00 am - 3:00 pm

Free lunch provided for employees to raise awareness about rare diseases and their impact within our local community.

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11:30 am

Minnesota Rare Disease Day Virtual Event

February 26 @ 11:30 am - 3:30 pm

Telehealth in Rare Disease Clinical Practice and Research: The Silver Lining Now and Beyond COVID-19” Keynotes: Susan Berry, MD, and Bobby Patrick 11:30 A.M. – 12 P.M. EXHIBITORS 12 P.M. – 2:30 P.M. FORMAL PROGRAM 2:30 P.M. – 3:30 P.M. RARE ACTION NETWORK (RAN) BREAKOUT SESSION Rare disease advocates are invited to participate in a Read more >

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12:00 pm

Tennessee Rare Disease Day Virtual Event

February 26 @ 12:00 pm - 1:00 pm

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

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Illinois Rare Disease Day Virtual Event

February 26 @ 12:00 pm - 2:00 pm

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

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Webinar: Real World Data and the COVID-19 Pandemic

February 26 @ 12:00 pm - 1:00 pm

This webinar, Real-World Data and the COVID-19 Pandemic, is part of the NHC's introductory training series on Real-World Data (RWD) and Real-World Evidence (RWE). This webinar series is free and open to all. It is intended for patients, patient group staff, and others interested in learning about RWD and RWE.

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1:00 pm

Georgia Rare Disease Day Virtual Event

February 26 @ 1:00 pm - 2:30 pm

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

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UCLA Rare Disease Day 2021!

February 26 @ 1:00 pm - 3:00 pm

Join us for UCLA's California Center for Rare Diseases first Rare Disease Day event featuring a guest speakers, a UCLA expert rare disease physician panel, patient stories told in their own words, innovative treatments and community and advocacy experts. Friday, February 26, 2021 1:00 – 3:00 p.m. PT via Zoom - please register to get Read more >

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3:30 pm

Virtual Genetic Pop-Up – hosted by Jamie

February 26 @ 3:30 pm - 5:30 pm

A Genetics Pop-up is a small gathering online, spearheaded by a genetic ambassador, to share genetic resources with families and those who work with families impacted by genetic conditions. A Genetics Pop-Up provides a safe space for individuals and families to ask questions about genetics and get connected to resources that can help answer those Read more >

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4:00 pm

Guthy-Jackson Charitable Foundation Rare Disease Day Event

February 26 @ 4:00 pm - 5:00 pm

The Guthy-Jackson Charitable Foundation invites you to join them on Friday, February 26 at 4:00 p.m. ET for our virtual event celebrating UCLA Rare Disease Day 2021. Hear from California Center for Rare Diseases at UCLA clinical experts, share in patient stories, and learn from advocacy leaders in the community. This is a free event Read more >

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5:00 pm

Healthcare and Advocacy Careers in Rare Diseases

The Mission San Jose High School Students For Rare Diseases Club is kick-starting the year with a Rare Disease Day Career Panel! Learn more about healthcare and advocacy careers and what you can do now in high school to support the rare disease community and also think about a career in which you can continue Read more >

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9:00 pm

Let’s ask someone who knows

February 26 @ 9:00 pm - 10:00 pm

We come together with physicians and tell you about health issues at 21:00 on Friday every week.

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