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Immuno-Heme Patients

Private·2 members


Welcome to the Immuno/Heme Patient group! You can connect with other members, get updates and share videos.

My name is Evelyn, my son Elias was born with an x-linked primary immunodeficiency and rare disorders called NF Kappa Essential Modulator Disorder. My son's journey the first few years was extremely tough, painful, and isolating. My son's journey inspired me to start Race For Immunology and change the narrative around rare and immuno/heme disorders. Support research and education in this field, and our number one goal is to make genetic testing and genetic counseling available to anyone who needs it.

I appreciate you being here and hope we can learn, support, and grow together. Make the world of Immuno/heme and rare disease stronger, together!


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  • December 4, 2020


  • Evelyn Argirokastritis
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