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graft versus host disease (GVHD)

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 if you have questions or comments.

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

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: 

Ocular GVHD - Diagnosis and Treatment

In this webinar, Dr. Sandeep Jain will discuss the diagnosis and treatment of ocular GvHD which occurs in 40-60% patients following an allogenic transplant. Ocular GVHD may lead to severe ocular surface disease, which can significantly diminish quality of life and restrict daily activities. He will answer questions from participants at the end of the presentation.

Cutaneous Graft v Host Disease - Diagnosis and Treatment

In this webinar, Dr. Edward Cowen will discuss cutaneous (skin) graft v host disease (GvHD) - a common post-transplant complication.  GvHD can affect different layers of the skin as well as the mouth, genitals, hair and sweat glands. Dr. Cowen will discuss diagnosis, the symptoms of skin GvHD and current treatment options. There will be a Q & A session at the end of the presentation. Questions can be submitted in advance to

Edward W. Cowen, M.D., M.H.Sc

Cowen, Edward
National Institute of Arthritis and Musculoskeletal and Skin Diseases at NIH

Edward W. Cowen, M.D., M.H.Sc., leads the NIH Dermatology Consultation Service, conducts independent and collaborative research, and oversees the continuing medication education-accredited Dermatology Grand Rounds, Branch Clinical Fellowship and resident education programs. He is an internationally recognized expert in cutaneous graft-versus-host disease and serves as Director on the American Board of Dermatology as well as on the Editorial Board of JAMA Dermatology.

Clinical Trials and Children

Until recently, children were rarely included in studies of medical treatments. As a result, much is still unknown about how children respond to drugs, some biologics (such as gene therapy) and medical devices. According to the U.S. Food and Drug Administration (FDA), only 20-30% of approved drugs have actually been labeled for use in children.

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