In less than five weeks, the PURA Syndrome Foundation will join together with other rare disease organizations across the globe in celebrating World Rare Disease Day. Rare disease day is dedicated to raising awareness among the general public and key decision-makers about rare diseases and disorders and their impact on patient’s lives. World Rare Disease Day gives a public and social platform for rare stories of hope, struggle, and resilience.
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 supporters to join the Foundation in raising awareness for PURA Syndrome on Friday, February 28th, 2025. 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 28th 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 template to assist you in sharing your story.
-
-
- Click here to download the generic template
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 OR if you are unable to do it yourself, please email a photo to [email protected].
- Click here to download the generic 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. #ShareYourColours by creating a beautiful work of art or painting your face using the Rare Disease Day or PURA Syndrome colors!
5. On February 28th, wear your rare disease or PURA Syndrome t-shirts, bracelets, and buttons to raise awareness in your local community. Need gear? Purchase items at our Zazzle store and a portion of proceeds will be donated to the PURA Syndrome Foundation.
6. Consider a donation or start a fundraiser to benefit the PURA Syndrome Foundation by visiting https://givebutter.com/c/pura2024/. You can also share the link to our online auction with paintings by PURA Researcher Dr. Robert Janowski (https://givebutter.com/c/pura2024/auction).
We look forward to celebrating with you on February 28th!
Do you have any media contacts? We are looking to do some PR around Rare Disease Day and would appreciate your help in getting us connected. Also, please let us know if you family would be willing to be interviewed by a local news station. Please email [email protected] if you can help!
