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paroxysmal nocturnal hemoglobinuria (PNH)

MDS Virtual Patient Support Group

Event Date: 
Sat, 03/12/2022 - 1:00pm (EST)

This virtual support group is designed to support patients diagnosed with MDS. The group is hosted by AAMDSIF and will be monitored to ensure the privacy and safety of our participants.

Transplant Virtual Support Group

Event Date: 
Wed, 03/16/2022 - 5:30pm (EDT)

This virtual support group is designed to support patients who have undergone transplant or who are considering this as a curative option for

Science Simplified: What is a Natural History Study?

Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science accessible and empower rare disease community members with scientific knowledge. Dr. Brown has over a decade of experience in neurodevelopmental research and is currently the Scientific Director for TESS Research Foundation. Please reach out to her at tanya@tessfoundation.org if you have questions or comments.

Surfer grounded by PNH Treatment

Person's Name: 
Kirby Harness

I was diagnosed with PNH fifteen years ago, at the age of 51.  This is my story.

I grew up on the West Side of Los Angeles.  Raised by a single parent, my mother was a strong woman of faith.  My father, the eldest of twelve, died of a heart attack when I was about nine months old.  Four of his six brothers, and a couple of my cousins died at an early age.  My mother always said, “those Harness men have bad blood.”  Little did I know what she meant at the time.

Bone Marrow Disease(s): 
Content source: 

Resuscitating a Dying Marrow: Emerging Concepts and Treatment Advances in Myeloid Malignancies

We are excited to announce a complimentary, CME-certified on-demand webcast series Resuscitating a Dying Marrow: Emerging Concepts and Treatment Advances in Myeloid Malignancies.  This enduring material was recorded during the Virtual Friday Satellite Symposium held on December 10th, 2021 preceding the 63rd Annual ASH Meeting and Exposition.

Pediatric Parents Virtual Support Group

Event Date: 
Tue, 03/08/2022 - 7:30pm (EST)

This virtual support group is designed to support pediatric parents whose children have been diagnosed with

Fighting for a Transplant : Stefania conquers Aplastic Anemia and PNH ~ Stefania demuestra su VERDADERA fuerza

Person's Name: 
Stefania Erazo

Hi! My name is Stefania, I am 31 years old, and I am from Ecuador. My life changed in July 2018 when I was diagnosed with very severe

Content source: 

2022 March for Marrow Texas

Welcome to our first in-person March for Marrow TX, The Woodlands, since 2019! We have scheduled our 13th Annual March for Marrow at the beautiful Northshore Park, 2505 Lake Woodlands Dr, The Woodlands, TX 77380.

Following two years of virtual events, we are inviting everyone across the state of Texas to be with us in person or virtually as we celebrate being together. We will stand with our arms outstretched from Houston to El Paso and from Amarillo to Brownsville, from east to west, and north to south.

Event Date: 
Sat, 04/02/2022 - 8:00am (EDT)
Community Event Type: 
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