In a few weeks, the PURA Syndrome Foundation will join together with other rare disease organizations across the globe in celebrating World Rare Disease Day. When an individual is impacted by a rare disease, awareness is critical in increasing support, raising funds, increasing research opportunities, breaking down social barriers, and educating the general public. We invite our families and biggest supporters to join the Foundation in raising awareness for PURA Syndrome on Thursday, February 29th, 2024. Specifically, we ask you to participate in at least one of the following ways:
1. Follow the PURA Syndrome Foundation on social media. Like, comment, and share some of our Rare Disease Day posts. You can find us on Facebook and Instagram.
2. Tell your story. As February 29th approaches, consider sharing your #PURAPerfect story on social media, via video, through a letter or email, or get creative! We have seen families create educational materials to send to their child’s school and even lobbying for better healthcare with local and state legislatures. We would love to hear your stories! Tag us on social media or email [email protected] if you are interested in sharing your story on the Foundation’s social media pages.
3. The PURA Syndrome Foundation has created a social media templates to assist you in sharing your story.
- Download one of the profile pictures below to share to your social media page.
OR
- Using the free photo editing software Canva, visit the following link to add a photo of your family or the #PURAPerfect individuals in your life to this template: Rare Disease Day Canva Template
- Upload the personal photo of your choice
- Add your personal photo to the social media template and size appropriately
- Download your image to your phone or laptop
- You are now ready to share your image(s) to social media
- Don’t forget to tag the Foundation!
4. #ShowYourStripes and #ShareYourColours by painting your face or creating a beautiful work of art using the Rare Disease Day or PURA Syndrome colors!
5. On February 29th, wear your rare disease or PURA Syndrome t-shirts, bracelets, and buttons to raise awareness in your local community.
6. Consider a donation or start a fundraiser to benefit the PURA Syndrome Foundation. To start your own fundraiser, visit https://purasyndrome.networkforgood.com/projects/218624-world-rare-disease-day-2024. To make a donation, visit https://purasyndrome.networkforgood.com/projects/218622-world-rare-disease-day-2024. Please consider adding the donation link to any stories shared on social media.
7. Check out our website for more ideas at: https://purasyndrome.org/make-an-impact/awareness/
We look forward to celebrating with you on February 29th!
The PURA Syndrome Foundation
