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Here's where you'll find a regularly updated, broad range of articles written by the AAMDSIF team, allied health organizations and news organizations. By staying well-informed, patients and families are practicing a form of self-support that will help them be more effective self-advocates when engaging with health care providers.

Passage of the 21st Century Cures Act

Originally Published: 12/08/2016
The 21st Century Cures Act finally passed this week with overwhelming bipartisan support. In May 2015, the proposed legislation (H.R. 34) was introduced in the U.S. House of Representatives, with the goal of promoting the development and speeding the approval of new drugs and devices. Experts at the New England Journal of Medicine believe its provisions could have a profound effect on what is known about the safety and efficacy of medical products, as well as which ones become available for use. President Barack Obama has indicated that he would sign the bill into law as soon as it reached...

AAMDSIF to make news at ASH Conference

Originally Published: 12/01/2016
November 30, 2016 Contact: Barbara Holzer,, (301) 279-7202, x106 Alice Houk,, 301-279-7202 x101 Pharma, Docs Can Now Put Their Mouth Where Their Money Is; Patient Advocacy Group to Hold Swabbing Event at ASH AAMDSIF to Include Be-The-Match Drive at its ASH Exhibit Booth BETHESDA, MARYLAND – On Dec. 3 when the doors open at the 58th Annual Meeting of the American Society of Hematology (ASH) in San Diego, the world’s largest professional association of clinicians and scientists working on blood diseases will provide its huge crowd of attendees with a beehive of...

MDS Update - December 2016

Originally Published: 12/01/2016
MDS Update - December 2016

Like AAMDSIF, HHS now provides more info on clinical trials

Originally Published: 11/22/2016
In an effort to make information about clinical trials widely available to the public, the U.S. Department of Health and Human Services today issued a final rule (link is external) that specifies requirements for registering certain clinical trials and submitting summary results information to The new rule expands the legal requirements for submitting registration and results information for clinical trials involving U.S. Food and Drug Administration-regulated drug, biological and device products. At the same time, the National Institutes of Health has issued a...

PACCT+ Patient Committee Holds First Meeting

Originally Published: 11/17/2016
On September 24, the AAMDSIF Patient Advisory Council on Clinical Trials (PACCT+) members met in Arlington, Virginia for an orientation seminar to meet fellow committee members, and learn from two experts about clinical trial design and the state of current bone marrow failure (BMF) research. PACCT+ is a two-year demonstration project to develop and test a program to train patients in basic clinical and health services research concepts. PACCT+ was funded by the Patient Centered Outcomes Research Institute (PCORI) through AAMDSIF’s PCORI Engagement Award.  A panel of 18 trained patients and...

Recent developments in bone marrow transplants

Originally Published: 11/15/2016
Approximately 14,000 patients in the United States could benefit from a bone marrow transplant each year; however, only four out of every 10 will receive one, according to data from the DKMS organization. In conjunction with National Marrow Awareness Month, HemOnc Today presents eight recent developments in bone marrow transplantation. A prolonged course of lenalidomide (Revlimid, Celgene) maintenance following autologous hematopoietic stem cell transplantation improved survival outcomes without increasing the incidence of second primary malignancies in patients with multiple myeloma. A...

What’s keeping you from our patient conferences?

Originally Published: 11/15/2016
If you have never joined us at one of our Living with Aplastic Anemia, MDS, or PNH Patient and Family Conferences, we need your help! These regional conferences have always provided an opportunity for patients, loved ones and caregivers to hear from the top experts on bone marrow failure diseases and learn about the current thinking and advances in treatment of aplastic anemia, MDS and PNH.   Please take a few minutes to complete our short survey below, designed to help us understand what might be keeping you from coming. We will use this information to improve our slate of 2017 conferences...

New Study Seeks Vietnam-Era Vets Exposed to Agent Orange

Originally Published: 11/08/2016
FOR IMMEDIATE RELEASE Nov. 8, 2016            Contact:  Barbara Holzer, 301-279-7202, Vietnam-Era Vets Sought for Study to Determine Links Between Agent Orange and Rare Bone Marrow Cancer BETHESDA, MD – The Aplastic Anemia and MDS International Foundation (AAMDSIF) is proud to support a unique study by Dr. David Steensma, MD, on Agent Orange exposure and its potential link to myelodysplastic syndromes (MDS) in Vietnam-era veterans. MDS is a rare bone marrow failure disease that severely impacts the body’s ability to produce blood. The study is being conducted at the Dana-...

Top expert calls future MDS/AML care “promising”

Originally Published: 11/02/2016
When envisioning the future treatment paradigms for myelodysplastic syndromes (MDS) and acute myeloid leukemia (AML), researchers predict that hypomethylating agents, immunotherapies, and multikinase and BCL-2 inhibitors are just a few examples of what the field can expect in the coming years. Guillermo Garcia-Manero, MD, lectured on current and likely future treatment strategies in MDS and AML during the 2016 OncLive State of the Science Summit on Treatment of Hematologic Malignancies. “I’m excited to be here and there is a lot of progress that is happening in both MDS and AML,” explains...

AAMDSIF and PNH Foundation To Merge

Originally Published: 11/01/2016
FOR IMMEDIATE RELEASE Nov. 1, 2016            Contact:  Barbara Holzer, 301-279-7202, PNH Research and Support Foundation to Merge With Aplastic Anemia and MDS International Foundation BETHESDA, MD – The Aplastic Anemia and MDS International Foundation (AAMDSIF) is pleased to announce its merger with the PNH Research and Support Foundation (PNHF). The merger will take place on January 1, 2017. Since 2013, AAMDSIF and PNHF have been strategic partners in helping patients with PNH (paroxysmal nocturnal hemoglobinuria), a rare bone marrow failure disease. The partnership ...
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