Your Donation helps

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I listen to the stories of other parents ...

who struggle each and every day. Sleeping by the side of their child each night who is on oxygen and heart monitors. Listening to the cries and screams of their child who is in pain and they do not know why. Dropping everything in an instant to go back to the hospital again. Watching their child seize constantly and helplessly trying different medicines to ease their symptoms. Wondering what his future will be like and how long will he live.  Leaving their careers to be full-time providers and having nightmares about what will happen to their children when no one is there to care for them. Struggling with the fragmented, broken, and bureaucratic system of endless providers, insurance companies, vendors, organizations, and schools to obtain help. And then there are the children who fall between the cracks — helpless and frail — because their parents may be struggling with their own personal life challenges.

We strive to create a community of support for each other. With your investment, AЯRE will study this rare disease, understand the mechanisms behind it, and find a way to improve treatments and care for this vulnerable population.

Give a sustainable gift

  • Your support will ensure that AЯRE can continue to support desperately needed research and keep the medical/scientific community engaged with consistent & increasing funding levels

  • Assist with finding treatments to extend and improve quality of life for affected individuals

  • Invest for future openings of ASXL Centers of Excellence, which will designate elected hospitals and specialists around the world that can centrally manage and provide exemplary care for ASXL patients and their families