Event
World Rare Disease Day
Held on the last day of February each year, World Rare Disease Day is an annual observance to raise awareness for 400 million people affected by rare disease globally. February was picked for this observance because it is the rarest among months – it is the only month that does not have 30 or 31 days. In most years, World Rare Disease Day falls on February 28th, but in a Leap Year, it is on February 29th. Here’s what can you do to help elevate the cause and shine a light on rare disease patients and caregivers around the world:
Add or Join a Rare Disease Event
Whether you’re organizing a local awareness event, a community fundraiser or a large-scale conference, you can add the event to the map in our Community Events Hub. To create an event, log in and create a RARE Portal profile. Looking for World Rare Disease Day events near you? Search the events in the Global Genes Events Hub. You can also post your events in our Event Hub.
Rare Disease Day Media Kit
Feel free to use the media kit we have prepared and the resources in the kit to help promote Rare Disease Day to your own audiences.
Interact With Us on Social Media
Show us how you are celebrating and honoring World Rare Disease Day on social media. Tag us @GlobalGenes and make sure to use the hashtags #RareDiseaseDay and #CareAboutRARE, for a chance to be highlighted on our social media channels. Follow us on Instagram, Facebook, LinkedIn and Twitter to stay up-to-date.
Spreading Awareness on Social Media
We will be sharing rare disease stats, individual and organization stories, and events throughout the month of February to spread awareness about rare disease on our social media accounts.
Rare Disease Day Profile Picture:
Update your profile picture for the month of February and encourage others on social media to do the same.
Rare Disease Stats & Community Stories
We’ll be sharing rare disease stats and stories, and hope you will too. Follow us/share our posts, or you can download and post directly!
You can follow us @globalgenes on Twitter, Instagram, Facebook and Linkedin
Spread the Word About YOUR Events & Activities
We want to amplify what your organization is doing for Rare Disease Day, too!
Tag us on social media @globalgenes and use hashtags #CareAboutRare #GlobalGenes #RareDiseaseDay. We will re-share on our Instagram and Facebook Stories and retweet on Twitter.
Encourage Your Organization to Get Involved
Email a call-out to your organization and partners to get involved, or post on social media. Scroll to page 5 of the media kit for suggested text you can use and/or customize within your emails or posts.
In-Person Engagement
Join us in-person at a few live events, submit your events for us to help amplify, and see where the Global Genes team will be observing Rare Disease Day!
Washington, DC
We hope to see you at Rare Disease Week this year!
On the eve of Rare Disease Day, Maria Della Rocca, Senior Director, Support & Education Programs, will be attending a special event, Rare Disease Diversity Coalition Reception, February 27. Special guests will get an unveiling of survey findings developed in collaboration with Upequity: Diversity, Equity, and Inclusion Efforts in Rare Disease Organizations.
Boston, Massachusetts
Join us at Monday, February 27th at the “Accelerating Rare Disease Research: Patients as Partners” event, presented by Broad Institute of MIT and Harvard, in collaboration with The Termeer Foundation. Charlene Son Rigby, Global Genes CEO will share insights on partnering with patients to empower progress at the 3:40pm (ET) panel.
Karmen Trzupek, MS, CGC, Global Genes Senior Director of Scientific Programs, will also be attending.
Register here to attend in person or watch virtually.
Rare Disease Day @ NIH, February 28th
Stop by the Global Genes and RARE-X booths to say hello!
Salt Lake City, Utah
Join us for a Rare Disease Day Gathering at the Recursion World Headquarters. Along with with Utah Rare, Recursion, bioUtah, bioHive and University of Utah, we’re pleased to present a Rare Disease Day gathering for the
Utah rare disease community. All are welcome. Click here for more details
Around the World
Global Genes team members and partner organizations will be participating in local and virtual activities! If you’d like to submit images or video (<10 second horizontal video) to be included in a rare disease day wrap-up, email [email protected]
Rare Disease Week on Capitol Hill
Our team will be participating in the EveryLife Foundation events throughout the week! Don’t miss our own Megan O’Boyle on the Legislative Conference Agenda Wednesday, March 1, as she moderates a panel discussing funding for NCATS and the FDA’s Orphan Products Grants Program, and their importance to the rare disease community. Want to schedule some time to meet with a Global Genes team member? Email the team on the ground:
– Maria Della Rocca, Senior Director, Support & Education Programs – [email protected]
– Megan O’Boyle, Patient Engagement, RARE-X – [email protected]
– Mary Morlino, Patient Services Manager – [email protected]
Virtual Engagement
Observe Rare Disease Day with us virtually! Join us at a few virtual live events throughout this month.
2023 SickKids Rare Disease Day: February 28, 2023 from 12pm-3 pm EST
Vanessa Vogel-Farley, Research & Data Governance Lead, will be a keynote speaker for the Rare Disease Symposium 2023 “ Collaborative approaches to addressing diagnostic and therapeutic odysseys” sponsored by the Department of Clinical and Metabolic Genetics, The Canadian Gene Cure Advanced Therapies for Rare Diseases (Can-GARD) program, and the Genetics and Genome Biology program at SickKids. Can-GARD’s main aims are to promote earlier diagnosis and assist in the development of therapies for rare diseases through research, education and training. Join her by registering here.
Rare Disease Day at NIH 2023: February 28, 11:20AM–11:40AM EST, 12:50PM–01:30PM EST, and 2:50PM–3:10PM EST.
A poster presentation of our Rare Compassion Program will be shared by Nick Ehly, Program Coordinator. Join him here to learn more about the program and how it seeks to give rare disease individuals and families a chance to advocate for the rare community and med students a chance to build compassion, understanding, and empathetic communication skills, and gain interest in specializing in fields most relevant to rare disease. Register here.