In this issue: Rare Disease Day is around the corner! How can I get involved?
Welcome to our timely updates on all things SDS, Science, and Advocacy. We bring you a digest of recent scientific publications, conferences, and other newsworthy content - all relevant to SDS - with links to more details and learning opportunities. Are you interested in anything specific? Did we miss something? Let us know. Email genetics@SDSAlliance.org or message us on Facebook! This is all for you!
Share Your Colors on Rare Disease Day!
WHAT IS RARE DISEASE DAY?
Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.
Rare Disease Day was launched by EURORDIS Rare Diseases Europe and its Council of National Alliances in 2008. EURORDIS continues to lead the international campaign with a global patient community. Patient organizations from North America joined in 2009, followed by all continents by 2010. National Alliances, such as the Nation Organization for Rare Disorders (NORD) in the United States, ensure Rare Disease Day coordination at a national level, collaborating with local patient organizations and often organizing national events targeting policymakers. The number of participating countries has grown annually, with thousands of events now occurring on all continents in or around February. Since 2008, events have been held in over 100 countries.
Fun Fact: You can virtually attend the NIH Rare Disease Day Event with SDS Alliance! Our Genetics Project Manager, Ashley Thompson, MS, CGC will be attending this event in-person to represent SDS Alliance and the SDS community this coming week. Stay tuned for our Snapshot next week for updates on these events and others!
CELEBRATE THE UNIQUENESS OF BEING RARE
With over 300 million people globally living with a rare disease (and an estimated 5000 individuals with SDS in the US and Europe), we join hands with you across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.
The key message for Rare Disease Day 2024 is SHARE YOUR COLORS!
Here are some ways to get involved in this year's campaign:
1.GET INVOLVED ON SOCIAL MEDIA
Share your Rare Disease Day event videos - such as the timeless video we created for SDS, below - and photos on social media using #RareDiseaseDay and tag @rarediseaseday. You can also express your support for those living with rare diseases in your community by sharing a photo with painted hands on social media.
Explore the Rare Disease Day website for downloads including images, profile picture frames, Instagram filters, and Zoom backgrounds, and more that you can use on social media!
Use crucial rare disease statistics to convey that while each disease may be rare, collectively, they impact a vast number of people.
300 million people worldwide live with a rare disease.
There are over 6000 different rare diseases.
72% of rare diseases are genetic.
70% of these genetic rare diseases begin in childhood.
There are an estimated 5000 individuals living with SDS in the US and Europe, and many more are undiagnosed!
2. ORGANIZE AN EVENT!
Every year, thousands of events across over 100 countries commemorate Rare Disease Day. Most events will be online, allowing people worldwide to participate.
Plan an online event in or around February for Rare Disease Day to heighten awareness of rare diseases in your community. Here are some successful ideas from global organizers:
Illuminate your home for Rare Disease Day: see the Light Up for Rare Toolkit for more information.
Raise awareness on Facebook and Instagram Live, and invite your friends.
Hold an art, photography, or essay-writing competition.
Organize a walk.
Plan a sporting event.
Present your story to your local authorities.
3. BECOME A FRIEND
Become a Rare Disease Day friend to showcase your organization or company’s support for the campaign! Simply fill in your details to create a profile page on the Rare Disease Day website. This will display your commitment to supporting people living with a rare disease.
4. TELL YOUR STORY!
Raise awareness about rare diseases and their impact on people’s lives by sharing your personal experience of living with SDS or caring for someone who does. Submit your written or video testimony on the Rare Disease Day website and explore stories already shared by others!
5. TAKE ACTION LOCALLY
In addition to organizing events, you can act locally in your country, region, or area to raise awareness of rare diseases! On Rare Disease Day, we advocate for equity for people living with a rare disease worldwide.
CONTACT THE PRESS
Reach out to local or regional newspapers and radio stations to cover your Rare Disease Day event. Send out a press release to your area’s media, highlighting the issues most crucial to rare disease patients in your country. Watch the webinar ‘How to Use Rare Disease Day to Advance Your Advocacy Objectives’ to learn the basics!
GET POLITICAL
Write to key decision-makers about the pressing issues facing rare disease patients in your country, urging them to prioritize rare diseases! Advocate to policymakers for equitable access to diagnosis, treatment, care, and social opportunities for those living with a rare disease. For guidance on advocating for rare diseases within Universal Health Coverage, refer to the Rare Disease Day Equity Toolkit.
Invite politicians to your organization, to an event you’re hosting, or to a rare disease research lab. If you live in Europe, encourage your MEP to join the Parliamentary Advocates for Rare Diseases Network. If you live in the United States, register for Rare Disease Week on Capitol Hill hosted by the Rare Disease Legislative Advocates.
7. DOWNLOAD COMMUNICATION MATERIALS
The official Rare Disease Day communication materials and logo are freely available for your Rare Disease Day events' promotion. Materials available in Mandarin, English, Arabic, Spanish, Portuguese, French, Hindi, and Russian.
Also available for download:
The official Rare Disease Day logo
Website countdown
Rare Disease Day style guide
Fonts
Webinar toolkits.
If you, your friends, family, and colleagues take part in Rare Disease Day, don’t forget to share your photos from activities worldwide by uploading them to the Rare Disease Day website! We cannot wait to see how the SDS community lights up for rare this week!
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