PURA Syndrome Awareness

This page offers information on our awareness day efforts each year…

…in October for PURA Awareness Day,
…in February for Rare Disease Day,
…and throughout the year

     PURA Syndrome Awareness Day: October 23

    Mark your calendars! Each year we celebrate PURA Syndrome Awareness with a week full of activities, with the main celebration occuring on October 23. See below for some ideas on how you and your child can celebrate PURA Syndrome Awareness Day.

    Wear your PURA Perfect gear

    Make your own PURA Perfect gear or purchase some by clicking here.

    PURA Awareness Cards

    Make cards about your children for their school, adult living center, or other community group they participate in.

    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.

    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.

    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!

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