We can make a difference in the lives of everyone who has Pura Syndrome including the life of my 5 year old niece Amina who has been diagnosed with Pura Syndrome and scoliosis.

Join me in raising awareness for the PURA Syndrome on February 29th, 2020, for World Rare Disease Day. Let's support good in the world and make a difference. All donation will help fund much-needed research and provide continued support for families affected by this rare genetic condition.

Just a small donation will go a long way to helping me meet my goal for the PURA SYNDROME FOUNDATION