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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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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The KLS Community has come together to spread awareness of Kleine-Levin Syndrome and Rare Disease. All members of the community were invited to contribute to this message which will be displayed in the Times Square Billboard on Feb 28, 2021.
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Please join Firefly Fund for a virtual Run for Rare kicking off on World Rare Disease Day, Sunday, Feb. 28, and culminating on March 26, to raise awareness of rare diseases, including Niemann Pick Disease Type C1 (NPC). The goal of this event is to accelerate a cure for rare neurodegenerative genetic diseases that affect Read more >
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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 Bay Area will be celebrating its 3 year anniversary this year. We will be hosting this years event online and will feature 2-day live-stream festival featuring over 30 DJ's from the UK, Canada, NYC, Chicago, Las Vegas, Los Angeles, and the Bay Area. We also will have dance and music performances, wellness workshops Read more >
Find out more »As part of the Mum Runner February Virtusl Run, I am running 5km every hour for 24 hours raising money for Phelan McDermid Syndrome Foundation Australia. There are different levels and you can run or walk. Pop over to the Mum Runner page. https://mumrunner.com/product/phelan-lucky-february-virtual-run/
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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
Find out more »Passionate Kasi Chix is a Non-profit organization aimed to transform the lives of children in our Region and all over the world. We are hosting a school event to raise awareness of 7000 rare diseases that aren't talked about in our daily lives. Passionate Kasi Chix will rule out children related rare diseases for grade Read more >
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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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Delaware Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Delaware 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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This is our 3rd Annual event. This year we will highlight a family member of the NYPD and discuss how the COVID pandemic has affected out kids, schools, therapies and quality of life. For more information or the link to the ZOOM event contact Kevin O'Connor at [email protected]
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Texas Rare Action Network, Baylor College of Medicine and Texas Children’s Hospital invite you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Texas legislators and the general public on the challenges faced by rare disease patients and their families. We will explore how the formation Read more >
Find out more »Since 2008, Rare Disease Day (RDD) has been held annually on the last day of February. Bringing together physicians, patient organizations, researchers, medical companies, and of course, rare disease patients from around the world, RDD is a unique opportunity to raise awareness and bring support to the community. This year CENTOGENE is hosting a two-part Read more >
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Since 2008, Rare Disease Day (RDD) has been held annually on the last day of February. Bringing together physicians, patient organizations, researchers, medical companies, and of course, rare disease patients from around the world, RDD is a unique opportunity to raise awareness and bring support to the community. This year CENTOGENE is hosting a two-part Read more >
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In recognition of Rare Disease Day, Feb 28 Permission to Fly’s Butterfly Circle presents "Free to Be You", an open mic style Conversation that encourages you to express yourself through song, dance, spoken word, poetry, and, creative movement. In this Safe space, we are talking about ✨New Beginnings✨ What do new beginnings, transformation, and change Read more >
Find out more »Join the Ehlers-Danlos Support Group of Jacksonville for a special Rare Disease Day Social. Join the Zoom meeting to join in the conversation. The social is open to all. Join Zoom Meeting: Online: https://zoom.us/j/313494237 Via Phone: 646-558-8656 Meeting ID: 313 494 237 Password: 760743 For more information please contact support group leader, Rachel Goodman at Read more >
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Rare Disease Day at Community Heroes organization is part of a global observance to raise awareness of rare diseases and their impact on patients and families. Topics: Advocacy, Research, Myosin Deficient Muscular Dystrophy, visible VS invisible Diseases: The event is free and open to the public, including patients, their families and caregivers, healthcare providers, research Read more >
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On the occasion of Rare Disease Day 2021, on February 28, the beautiful Tritone fountain, seventeenth-century fountain in Rome, Italy, by the Baroque sculptor Gian Lorenzo Bernini, will be lit up from 18:00 to 22:00 with the colors of the rare disease day, blue, pink and green. Dr. Renata Sarno, President of the BCM Families Read more >
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On the occasion of the Rare Disease Day 2021, on the 28th of February, the beautiful 17th century fountain by Gian Lorenzo Bernini in Rome, Fontana Del Tritone, will be lit up with the colors of the rare disease day: blue, pink and green. Dr. Renata Sarno, President of the BCM Families Foundation: "Let's turn Read more >
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