Aplastic Anemia and PNH - Update on Diagnosis and Treatment

Aplastic Anemia and PNH - Update on Diagnosis and Treatment
Carlos DeCastro, MD - Professor, Duke University
Panel Discussion Addressing the Gaps in Serving Patients with Aplastic Anemia and PNH - (begins at 42:30)
Emma Groarke, MD, NHLBI Hematology Branch
Susie Lee, PA-C, Keck School of Medicine, University of Southern California
Debra O’Neal, MSW, Patient
Topics include: Access to treatment and specialists; explaining the language of the conditions; barriers including lack of insurance, transportation, workplace issues, finances, and caregiver support.
AAMDSIF Symposium: Providing Equitable and Inclusive Care to Patients with Bone Marrow Failure Conditions
This virtual symposium provides updates on the most recent advances in the pathophysiology, diagnosis and clinical management of aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), secondary acute myeloid leukemia (AML) and hematopoietic stem cell transplantation. Additionally, the program addresses the current gaps in patient care for each of these diseases, such as clinical trial enrollment, reaching diverse patient populations, barriers to care, diagnostic challenges, genetic profiling, long term supportive care, and quality of life issues. The presenters represent innovative programs focusing on closing inequities and reaching underserved patient populations. The patient voice is incorporated through patient panelists and patient survey responses.
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[@aprilakom4870]

OMG ! I was THE FIRST CHILD THAT HAD A BONE MARROW TRANSPLANT FROM MY MOMMA BEING MY BMT DONNER. PLEASE DOCTOR, LOOK MY NAME , APRIL D. AKOM UP. MY BMT WAS IN THE MID TO EARLY 80's. Trust me aplastic anemia doctors I spent eighteen months at Duke University hospital in the 80s getting the first bone marrow transplant from parent to child

[@AAMDSIF]

We're so happy you are doing well!

[@jessicastroud7213]

I have PNH and AA (recently diagnosed) and would like to find a specialist close to DC or DC area.

[@AAMDSIF]

Hi Jessica- thank you for reaching out to us. In the DMV area, the closest PNH experts are Dr. Amy DeZern, www.hopkinsmedicine.org/profiles/details/amy-dezern or Dr. Robert Brodsky, www.hopkinsmedicine.org/profiles/details/robert-brodsky at Johns Hopkins. You can also reach out to the National Institutes of Health and see if you medically qualify to be seen and treated there. The contact person is Olga Rios, 301-496-4462 or email [e-mail]. Have you ordered our new patient toolkits for PNH and aplastic anemia? These are excellent resources to help you understand your diagnosis and treatment options. www.aamds.org/education/patient-guides-and-fact-sheets. Please let us know how else we can help you.

[@jessicastroud7213]

@@AAMDSIF thank you for responding to my message, I appreciate your effort. I send Mrs. Rios a message and hoping she will get back to me soon. One more question, maybe you can answer it. I have half siblings who live in Germany and Honduras (unfortunately I don't have any siblings here in the states), is there any way they could be tested to be a Bone marrow donor while being over there?

[@winvilla3427]

MY HUSBAND WAS DIAGNOSE WITH PNH 🥺

[@AAMDSIF]

We are very sorry to hear this. Although we do not have a personal contact with the Philippine Society for Blood & Marrow Transplantation, here are the physicians who are members: psbmt.org/contactus.php One of these physicians may be able to assist you. Or contact the HSCT Program, St Luke’s Medical Center and National Kidney Transplant Institute, Quezon City, Philippines