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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…
Patient Chronicle last updated
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Recordings:
Aplastic Anemia
Low Risk MDS
High Risk MDS to AML
Transplant and GVHD
MDS/MPN Overlap
A Patient Story: Shauna McMillian
Managing PNH Complications
Conference Event last updated
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Session Recordings Available:
MDS to MPN Overlap from the 2025 Boston Patient and Family Conference
High Risk MDS from the 2025 Boston Patient and Family Conference
Low Risk MDS from the 2025 Boston Patient and Family Conference
What is Aplastic Anemia? From the 2025 Boston Patient and Family Conference
What is PNH? Webinar recorded at the 2025 Boston Patient and Family Conference…
Conference Event last updated
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Here are links to the conference sessions from the 2025 Kansas City Patient and Family Conference:
MDS/MPN Overlap
PNH and Current Therapies
Living Well with Bone Marrow Failure
Judy's Story of PNH
Transplant and GVHD
Aplastic Anemia
PNH Complications
High Risk MDS
Conference Event last updated
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Recorded Sessions:
Nutrition for Aplastic Anemia, MDS, or PNH
Managing PNH Treatments
Advances in Aplastic Anemia
What is PNH?
Transplant and GVHD: Aplastic Anemia and PNH
Inherited Bone Marrow Failure (focus on pediatrics)
Expert Panel: Pediatric Bone Marrow Failure
Life After Diagnosis - Pediatrics
Pediatric MDS
Transitioning to Adult Care
Pediatric PNH
Pediatric Aplastic…
Conference Event last updated
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ABSTRACT
Background
Elevated blood counts in polycythemia vera (PV) are associated with increased thrombotic risk, which contributes to morbidity and mortality.
Research design and methods
This retrospective study describes treatment patterns and blood count control in patients with PV managed at community oncology practices (January 2014–February 2023; Integra Precision Q database).
Results
Of…
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Pediatric nurse to medical student to patient? This was Claire's life. Listen to her story here.
Podcast Episode last updated
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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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Key Points
Eltrombopag
Eltrombopag:
What are the possible side effects of eltrombopag (Promacta)?
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficult breathing; swelling of your face, lips, tongue, or throat.
Stop using eltrombopag and call your doctor at once if you have:
…
combined with IST demonstrated a trend towards a favorable…
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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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Join us in Verona Park, NJ on Sunday, September 28, 2025 for a day of remembrance and awareness in celebration of the 19th Annual Walk for PNH.
The Walk for PNH is the nation's largest event to raise awareness and funds for PNH education and research. This inspiring event calls on participants of all ages and abilities to join in the fight against PNH.
Community Event last updated
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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…
Patient Chronicle last updated
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Watch these sessions 2024 Patient and Family Conference, held in partnership with the University of Chicago.
Aplastic Anemia
Advances in Treating PNH
Fatigue Management
Conference Event last updated
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2024 Patient and Family Conference in Los Angeles
Session Recordings:
Transplant for Aplastic Anemia and MDS
Emerging Therapies in High-Risk MDS
Cardiovascular Concerns after HCT
Supportive Care Management
Advances in the Therapy of PNH
Advances in Treating Lower-Risk MDS
Palliative Care
Living with Chronic GVHD
A Patient Story
Inherited Bone Marrow Failure Syndromes
Advances in…
Conference Event last updated
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Due to the impact on the Tampa, Florida community and surrounding areas by Hurricanes Helene and Milton, the AAMDSIF Tampa Patient and Family conference has been cancelled.
We will be announcing future webinars so stay tuned for more information from us.
Our thoughts are with all of those impacted by these devastating storms.
Conference Event last updated
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Findings refute former consensus that pregnancies post-transplant are nearly impossible, highlight need for increased fertility counseling
(WASHINGTON, July 15, 2024) — Despite treatment-related fertility challenges, female patients can become pregnant and give birth to healthy children after undergoing allogeneic hematopoietic cell transplantation (alloHCT), according to a…
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The conference was held over two days - Friday, July 19 from 2-7 PM ET and Saturday, July 20 from 8AM - 4 PM ET.
Watch these recordings from conference sessions:
High-Risk MDS
A Patient Story
Aplastic Anemia
GVHD - Graft VS Host Disease
Low-Risk MDS
PNH
Nutrition and Bone Marrow Failure
Conference Event last updated
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Watch these recordings from the Conference Sessions:
What is my Diagnosis?
Aplastic Anemia
Inherited Bone Marrow Failure
Leukemic Transformation
Myelodysplastic Syndromes
MDS and Transplant Therapies
MPN Transplant Therapies
MPN Non-Transplant Therapies
Conference Event last updated
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On October 14, 2023, Patient and Family Hybrid Conference, in Partnership with Yale Cancer Center, was held in New Haven, CT. Find recordings or materials from this conference here.
Session Recordings:
High-Risk MDS
Managing Low Blood Counts
PNH and Non-Transplant Therapies
Aplastic Anemia and Non-Transplant Therapies
Getting the Right Diagnosis
Conference Event last updated
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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.
Podcast Episode last updated
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