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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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Key Points:
Many patients and caregivers associate early palliative care (EPC) with hospice or death, a misperception that may persist even after gaining a better understanding of the role of EPC and may prevent them from experiencing the benefits of EPC.
Cultural or religious beliefs about illness and death may further influence views of EPC, and clinicians must engage in culturally sensitive…
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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…
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paroxysmal nocturnal hemoglobinuria…
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DEADLINE MAY 8Senators Roger Wicker (R-MS) and Dick Durbin (D-IL) are circulating a bipartisan letter to the Senate in support of increased funding for the Department of Defense’s medical research accounts, including CDMRP and BMFRP.You can help by asking Your Senators to Sign the LetterSenators Roger Wicker (R-MS) and Dick Durbin (D-IL) are circulating a…
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Abstract
The diagnosis and treatment of hematologic malignancies has undergone significant advancements over the past few decades, resulting in enhanced outcomes. For hematologic malignancies diagnosed during pregnancy, this poses new questions. As possibilities continue to expand and the rising global incidence results in an increasing number of diagnoses within the pregnant population, there is…
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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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Evan biked daily. He had no symptoms. The diagnosis was fast, but surprising. Evan shares his remarkable story in this episode.
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Donna Gilbride explains her journey through diagnosis and treatment with MDS, or
Myelodysplastic Syndromes
Myelodysplastic Syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development.…
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Dr. Satheesh Chonat explains how pediatric patients with PNH, or
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…
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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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Thanks to the efforts of our AAMDSIF
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…
community and…
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The
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…
and MDS International Foundation joined 156 other…
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