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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
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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…
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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
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Curtis et al. (July 17 issue)1 report evidence of longer
graft-versus-host disease (GVHD)
graft-versus-host disease (GVHD):
Also called GVHD, it is a common complication of bone marrow/stem cell transplantation. It is caused when the donor's immune cells, now in the patient, begin to see the the patient's body as foreign and mount an immune response. GVHD most commonly effects the…
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Steroid-refractory GvHD (SR-GvHD) following allogeneic transplant is a major clinical challenge and is associated with substantial mortality [1]. While the European Society for Bone and Marrow Transplantation (EBMT) recommends ruxolitinib for second-line treatment of GvHD [2], some patients may experience side effects or refractoriness, and therefore require alternative treatment options [2].…
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Abstract
Purpose
Allogeneic hematopoietic stem cell transplantation (HSCT) is a curative treatment for advanced hematologic malignancies. HSCT using
human leukocyte antigen
human leukocyte antigen:
(LEW-kuh-site ANT-i-jun) One of a group of proteins found on the surface of white blood cells and other cells. These antigens differ from person to person. A human leukocyte antigen test is…
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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…
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Low rates of chronic graft-versus-host disease with ruxolitinib maintenance following allogeneic HCT
Key Points
Prolonged ruxolitinib administration after allogeneic HCT is associated with low rates of clinically significant chronic GVHD.
Abstract
Despite recent advances in
graft-versus-host disease (GVHD)
graft-versus-host disease (GVHD):
Also called GVHD, it is a common complication of bone marrow/stem cell transplantation. It is caused when the donor's immune cells, now in the…
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Cyclophosphamide
Cyclophosphamide:
Cyclophosphamide is in a class of medications called alkylating agents. When used to treat cancer, it works by slowing or stopping the growth of cancer cells in your body. When cyclophosphamide is used to treat bone marrow failure, it works by suppressing your body's immune system.
plus cyclosporin, a calcineurin inhibitor, significantly improved…
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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
Treg-engineered donor graft prevents acute and chronic GVHD.
Patients treated with Treg-engineered graft who develop GVHD respond to primary corticosteroid therapy at a high rate.
Abstract
Allogeneic hematopoietic cell transplantation is a curative therapy limited by
graft-versus-host disease (GVHD)
graft-versus-host disease (GVHD):
Also called GVHD, it is a common…
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Abstract
The role of ABO blood group system mismatch on allogeneic hematopoietic cell transplantation (allo-HCT) outcomes is controversial since current publications of large datasets are lacking. We retrospectively analyzed 30,487 patients transplanted between 2010 and 2021 using the EBMT registry to assess ABO incompatibility’s effect on non-relapse mortality (NRM), overall survival (OS),…
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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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AAMDSIF Supports the Accelerating Kids' Access to Care Act.
On March 26, 2025, AAMDSIF joined with 212 additional patient advocacy and medical center organizations in urging members of the US Congress to pass the Accelerating Kids’ Access to Care Act.
Passage of this bill will permit faster, more thorough care, for children with complex medical conditions.
Please view the PDF below.
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Axatilimab-csfr (Niktimvo), a CSF-1R–targeting agent that reduces the drivers of inflammation and
fibrosis
fibrosis:
(fie-BRO-suss) Scarring of tissue. Fibrosis of the bone marrow is an feature seen in some types of unclassified myeldysplastic syndrome (MDS).
, has been approved by the FDA in 9 mg and 22 mg vial sizes to treat adult and pediatric patients with
graft-versus-host…
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In this issue of Blood, Pidala et al report on the results of a multicenter phase 2 trial, in which a
graft-versus-host disease (GVHD)
graft-versus-host disease (GVHD):
Also called GVHD, it is a common complication of bone marrow/stem cell transplantation. It is caused when the donor's immune cells, now in the patient, begin to see the the patient's body as…
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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…
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Key Points
This study illustrates the survival benefits of abatacept combined with CNI/MTX in patients with hematologic malignancies undergoing HCT.
The addition of abatacept may provide an approach for alternative donor pool expansion when
HLA
HLA:
See human leukocyte antigen.
-identical sibling donors are unavailable.
Abstract
Abatacept plus calcineurin inhibitors/methotrexate (CNI/…
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Dr. Mikkael Sekeres describes why patients should request a second opinion about their
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…
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Thank you for attending the 2023 Salt Lake City Patient and Family Conference. We will keep uploading presentations as we receive them, please keep checking back for updates.
Presentation Materials:
Predisposition to Inherited Bone Marrow Failure Syndromes
Aplastic Anemia and Non-Transplant Therapies
MDS and Non-Transplant Therapies
PNH and Non-Transplant Therapies
Ask the…
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