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CONFERENCE LOCATION:Jack & Sheryl Morris Cancer Center165 Somerset StreetNew Brunswick, NJ 08901 PARKING: There are two free parking options:Valet Parking: Available at 15 Division Street, New Brunswick.Self-Parking: Available in the Hardenberg Street Garage (18 Hardenberg Street, New Brunswick). Take the third-floor skybridge directly into the Cancer CenterCONFERENCE AGENDA…
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Abstract
Purpose of Review
In inherited
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be…
syndromes…
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Session Recordings Available:
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Recorded Sessions:
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Here are links to the conference sessions from the 2025 Kansas City Patient and Family Conference:
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Patients with
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
,
paroxysmal nocturnal hemoglobinuria…
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Background:
Aplastic anemia
Aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
is a rare, life-threatening condition marked…
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Background
Paroxysmal nocturnal hemoglobinuria
Paroxysmal nocturnal hemoglobinuria:
(par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night. Hemoglobinuria means hemoglobin in the urine. Hemoglobin is the red part of red blood cells. A…
(PNH…
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Jen had a great life. She was married with two children, and she’s just transitioned from teaching to school counseling. At 41, life was busy yet wonderful.Her symptoms were unusual, but not alarming. The leg pain was new, as was the bruising. Then fatigue set in, far beyond usual tiredness from her schedule. A visit to the doctor did not offer a definitive diagnosis. They suggested it was…
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Pediatric nurse to medical student to patient? This was Claire's life. Listen to her story here.
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Veronica learned that delaying treatment was not a good idea.
That delay nearly ended her life.
In 2018, Veronica was a busy mom, working full time, leaving the house at 5:30 a.m., returning at 5:30 p.m. She stayed healthy by working and staying active. She is a busy mom of two young children, and all the normal activities of modern life. One day, she thought she caught a bad flu, so…
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Abstract
Over the past 10 years, there has been a marked increase in recognition of the interplay between the intestinal microbiome and the hematopoietic system. Despite their apparent distance in the body, a large literature now supports the relevance of the normal intestinal microbiota to steady-state blood production, affecting both hematopoietic stem and progenitor cells as well as…
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Damian was very active when routine blood work showed a problem. But Damian decided that going through treatment would be his mission, even if that meant two transplants. Listen here to his story.
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I was your typical 14 year old teenager who always enjoyed spending time with friends and playing sports. On and off for about two years, my parents would take me to see different doctors to figure out why I had aches and pains, stomach issues and fatigue.
When I tried out for the middle school volleyball team, I remember that every time the ball bounced off my arms it would leave a…
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Brianna had always been a healthy young girl. We initially noticed some rather minor things with her but did not know at first how serious they were. She had low-grade fevers that went away during the day, but came back in the evening morning and there was her first-ever nosebleed. She missed school for a few days, so we saw her doctor. There is also a clotting disorder that run in our family –…
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