Sufferers of trigeminal neuralgia know they are dealing with a rare disease. Medical professionals rarely come across a patient with TN in their whole careers. Diagnosis is difficult to obtain and the lack of neurologists, especially in Australia’s regional area, exasperate the isolation and despair for patients.
Every year the International Community come together to highlight the issues in February to raise awareness around rare diseases, and in October to highlight Trigeminal Neuralgia with the Light up in Teal event.
It is easy to feel helpless and isolated, but we urge all people diagnosed with TN to, tell your story, create a family event which highlights the day, wear the colours and answer questions.
Doing nothing and waiting for change is not a great option. Please tell us your story using this link.
Send a photo of your event or your outfit, and we will publish on our site.
How to Show Up for Rare Disease Day 2023
Light up and stripe up on February 28, organizers say, as preparations begin around the globe to raise awareness about rare diseases.
It’s not too soon to start planning for Rare Disease Day 2023, celebrated every year on the last day of February.
“It is a day to come together as a united community and raise awareness for rare diseases,” said Kristen Angell, Associate Director of Advocacy with the National Organization for Rare Disorders (NORD), at a recent kickoff webinar. NORD, based in the United States, collaborates with European patient group EURORDIS on the annual event.
The themes for Rare Disease Day 2023 are #ShowYourStripes and #ShareYourColours, giving the community a visible way to come together on February 28. Organizers recommend wearing your zebra stripes and lighting up homes and landmarks in the Rare Disease Day color palette (blue, pink, green and purple). In February 2022, CSL showed its support by lighting up Philadelphia’s Boathouse Row.
But perhaps the most impactful way to participate is by telling your personal story, scientist Sheldon Garrison said during the NORD webinar. It was a patient’s story that changed his entire career trajectory to focus on rare disease research.
“Whether that’s an opportunity for someone to inspire or influence someone like myself that’s on the research side of things, or to share the story with a legislator, or to share a story within the overall community, that is to me, a massive, massive win,” Garrison said.
Why wear zebra stripes for Rare Disease Day? The zebra is an icon of rare disease patients owing to a physician in the 1940s who taught medical students the maxim “if you hear hoofbeats, think horses, not zebras.” At the time, it was practical advice to suspect the most likely causes of illness and symptoms. But decades later, 7,000 rare diseases have been identified and supporters of the cause turned that horses vs. zebra advice on its head. Rare disease advocates took on the zebra as a beloved symbol. If you attend a rare disease event, expect to see zebra hats, zebra shirts and even TZ!, the zebra mascot of the Immune Deficiency Foundation.
Other ideas for getting involved in Rare Disease Day 2023 include attending virtual and in-person events, hosting your own event, raising funds for research, hanging flyers at local coffee shops or making social media videos that draw attention to rare disease resources.
“There are so many ideas out there, so be creative and find what works best for you and the community that’s around you,” NORD Donor Engagement and Events Manager Jaime Pacheco said.