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.
Help us show the world the people behind PURA Syndrome
For PURA Syndrome Awareness Month, we’re putting together a community video celebrating our PURA Perfect individuals — their personalities, smiles, interests, accomplishments, communication, movement, laughter, and everyday moments that make them who they are.
We’d love for families to send us a short video clip of their PURA Perfect person being themselves. It can be something big or small — playing, laughing, communicating, dancing, learning, exploring, spending time with family, or simply a favorite everyday moment.
Email your video to:
c.lozano@pura-syndrome.org
Please only submit videos that you are comfortable having shared publicly by the PURA Syndrome Foundation as part of our awareness efforts. A signed consent form will be required prior to use by the Foundation.
Let’s make PURA visible — and show the people beyond the diagnosis.
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.
Donate to our Together for PURA Campaign
12 Years. $300,000. 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 their caretakers.
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.
Profile Picture Frame
Show your support of PURA Syndrome and download the Facebook frame template and use your favorite editing tools to use it!
Wear your PURA Perfect gear
On Rare Disease Day, wear your rare disease or PURA Syndrome t-shirts, bracelets, and buttons to raise awareness in your local community. You may purchase some by clicking here.
Donate to our Rare Disease Day Fundraiser
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!
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! 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.
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!
