PURA Syndrome Awareness
Every story matters. Every share makes a difference.
Together, our voices raise awareness of PURA Syndrome, strengthen our community, and drive support for the research and resources that change lives.
PURA Syndrome Awareness Day is October 23!
Each October we celebrate PURA Syndrome Awareness with the main celebration occurring on October 23. See below for some ideas on how you and your child can celebrate PURA Syndrome Awareness Day.
Profile Picture Frame
Show your support of PURA Syndrome and download the Facebook frame template and use your favorite editing tools to use it!
PURA Awareness Cards
Personalize PURA Syndrome Awareness Cards to encourage your family’s community to learn more about your child and PURA Syndrome.
Wear your PURA Perfect gear
Make your own PURA Perfect gear or purchase some by clicking here.
Share your story
Are you interested in sharing your family’s PURA story? Fill out this Google Form to express interest and you will be contacted to schedule an interview.
Donate to our 11K for 11 years Campaign
11 Years. $11,000. One united community. Together, as families, friends, and supporters across the world, we can fuel research, raise awareness, and provide hope for every individual living with PURA Syndrome.
Donate Now!
PURA Awareness Gift Bags
Great for smaller groups, you can create awareness bags for your children’s school classes, adult living centers or other small community groups they participate in.
Rare Disease Day: February 28 or 29
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.
Each year, the PURA Syndrome Foundation joins 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 each Rare Disease Day.
Wear your PURA Syndrome Gear
On Rare Disease Day, wear your rare disease or PURA Syndrome t-shirts, bracelets, and buttons to raise awareness in your local community.
Tell Your Story
As Rare Disease Day 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 communications@pura-syndrome.org if you are interested in sharing your story on the Foundation’s social media pages.
Help Raise Funds for Research and Support
Consider a donation or start a fundraiser (link) to benefit the PURA Syndrome Foundation.
Working together, we can increase awareness about PURA Syndrome by:
- Helping newly diagnosed families with information about PURA Syndrome
- Educating doctors on PURA Syndrome
- Encouraging researchers to continue research on PURA Syndrome
- Assisting families to begin and complete the PURA Registry
- Being able to tell family members what a diagnosis means
- Visiting our store for PURA Syndrome merchandise
- Informing therapists and educators of current treatments and interventions that can best support individuals living with PURA Syndrome
- Coming soon: PURA Syndrome Awareness Cards
Together we are stronger!
