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Awareness and Inclusion for Rare Genetic Conditions.

Project 12-04 is an inclusive and educational community focused on bettering the lives of children and families affected by rare genetic conditions.

Join our mission to celebrate children and families affected by Rare Genetic Conditions.

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Our Initiatives

PKS Day (12-04)

December 4th, Project 12-04 celebrates Pallister-Killian Syndrome (PKS) Day. This day was started because PKS is on chromosome 12 with 4 copies of the short arm (p) hence, 12-04.   PKS is  one of the rare genetic conditions we advocate for. We do so by speaking at local schools or churches, hosting PKS Day events, ice cream socials,  and sit-down dinners to grow awareness.

Operation Xmas Jammie drives to fulfill requests of PKS Kids and others with rare genetic conditions,  to get a new pair of Christmas Jammies  in time for Christmas.  

Go to: to make your request for your child or choose to be a sponsor.

Educational Events

Spreading awareness through events is an essential part of bringing light to the rare genetic conditions we advocate for. We have hosted golf tournaments, formal galas, and other events. We hope to do so safely in a post COVID world soon!

Community Forum

Just because the condition is rare doesn't mean that your community has to be. Join our group of families that have been affected by rare genetic conditions. Maybe you're nervous about a doctor appointment, having a rough day, or just need someone to chat with- our community is there for you every step of the way.

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