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  1. 2024 Patient and Family Conference in Los Angeles Recordings will be coming soon! The conference offered special post-transplant sessions. Conference Location: Cooper Auditorium @ City of Hope 1500 E. Duarte Rd Duarte, CA 91010 Parking: Lots HV or G The parking lots are next to the Hope Village Hotel located on the Northwest corner of the City of Hope Campus. (Duarte Rd and Village Rd) Friday...
    Conference Event last updated April 15, 2024.
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  2. Register now for the 2024 Patient and Family Conference, held in partnership with the University of Chicago. Learn more about your bone marrow failure disease from the experts in the sessions - Register Here. Conference Location: University of Chicago David Rubenstein Forum 1201 E 60th Street Chicago, IL 60637 Parking: Two options: 1. Street...
    Conference Event last updated April 1, 2024.
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  3. The conference will occur over two days - Friday, July 19 from 2-7 PM ET and Saturday, July 20 from 8AM - 4 PM ET. This conference will provide sessions for both adults and children. At the hotel, parking is valet only and paid by AAMDSIF. Conference location - The Inn at Penn @ 3600 Sansome Street Philadelphia, PA 19104
    Conference Event last updated April 1, 2024.
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  4. Registration is open for the Tampa, FL, Patient and Family Conference.  Please join your peers and bone marrow failure experts for this opportunity! Register Here The event will be held at the Moffitt Cancer Center, Stabile Research Building, 12902 USF Magnolia Dr., Tampa, FL 33612 Parking:  Gold Valet - Paid by AAMDS Gold Garage (free self-parking on level 3)
    Conference Event last updated April 1, 2024.
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  5. The time is now to save your seat for the 2024 Patient and Family Conference in Los Angeles! Plan to attend on June 22, 2024, in Seattle, WA, in partnership with Fred Hutchinson Cancer Center - Register Here Conference Location: Fred Hutchinson Cancer Research Center Weintraub Building 1100 Fairview Ave N Seattle, WA 98109 Parking: There is parking in front of the Weintraub...
    Conference Event last updated April 1, 2024.
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  6. 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
    Conference Event last updated March 15, 2024.
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  7. I’m 31-years-old, and I was diagnosed with PNH in 2009 when I was 24. I am generally athletic, and in college I was a wrestler. I knew what I could expect when training, competing, and recovering from competition. I transitioned from wresting to mixed martial arts (MMA) in 2008. Naturally, when I started that, I wanted to be sure that my training and recovery were the best they could be. I was 9-...
    Patient Chronicle last updated March 7, 2024.
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  8. Join patients, families and caregivers for the 2023 Dallas, TX Patient and Family Conference This event is chaired and organized by Dr. Taha Bat from UT Southwestern. Patients with aplastic anemia, paroxysmal nocturnal hemoglobinuria (PNH), myelodysplastic syndromes (MDS), and acute myeloid leukemia (AML), family members, caregivers, nurses, and other health care professionals are welcome and...
    Conference Event last updated March 4, 2024.
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  9. Highlights Haploidentical stem cell transplantation with post-transplantation cyclophosphamide (PTCy-haplo) and umbilical cord blood transplantation (UCBT) achieved similar overall survival in adult patients with aplastic anemia. The rate of neutrophil engraftment was higher in the PTCy-haplo group than in the UCBT group. The cumulative incidence of grade II-IV acute graft-versus-host disease...
    Article last updated January 22, 2024.
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  10. Evan biked daily. He had no symptoms.  The diagnosis was fast, but surprising. Evan shares his remarkable story in this episode.
    Podcast Episode last updated January 11, 2024.
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  11. What does this FDA approval mean for patients with PNH?  Find out how this oral medication, Fabhalta, could replace one of the infusion treatments in this interview with Dr. Bart Scott.
    Podcast Episode last updated January 11, 2024.
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  12. Learn about the Americans with Disabilities Act and how it applies to patients.  Attorney Chris Mills shares his expertise in this episode.
    Podcast Episode last updated January 4, 2024.
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  13. What type of documentation do you need to take advantage of the Family Medical Leave Act?  Attorney Chris Mills answers questions from Leigh Clark, Director of Paitent Services at AAMDSIF.
    Podcast Episode last updated January 4, 2024.
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  14. Dr. Mikkael Sekeres describes why patients should request a second opinion about their bone marrow failure disease or blood cancer.  He also shares his own perspective about asking for a second opinion, recommending that patients do select this option.
    Podcast Episode last updated September 21, 2023.
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  15. 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...
    Conference Event last updated August 3, 2023.
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  16. Driven by his mother’s advice and his father’s memory, Richard M. Stone, MD, rose to become a global leader in leukemia care and research. Growing up, Richard M. Stone, MD, thought he was going to be an attorney like his father, but his direction in life changed when he was 15. His father, Benjamin, developed kidney cancer when Stone was just 5 years old, and 10 years later, the disease...
    Article last updated May 30, 2023.
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  17. What is "Chemo Brain" and how is it managed? Find out the best approaches for dealing with this common side effect in this recording with Dr. Jorg Dietrich.
    Podcast Episode last updated May 30, 2023.
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  18. When should patients be vaccinated, and with which version of the COVID-19 Vaccine?  Learn all about how each type of vaccine works and which patients with bone marrow failure diseases should be vaccinated.
    Podcast Episode last updated May 30, 2023.
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  19. Dr. Bhumika Patel explains why meningitis can occur in patients with PNH and how it is both treated or prevented.
    Podcast Episode last updated May 30, 2023.
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  20. What is a clinical trial?  Why should a patient consider participating in one? Olga Rios, RN, offers a brief explanation in this recording.
    Podcast Episode last updated November 21, 2022.
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