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Newsstand

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.

AAMDSIF Activities at ASH 2016

Originally Published: 12/14/2016
Satellite Symposium For the 9th consecutive year, AAMDSIF sponsored a satellite symposium at ASH in partnership with Cleveland Clinic. This year’s symposium, “Clinical Management of MDS/MPN:  A Mountain of Evidence for Treatment Selection in MDS/MPN” provided an in-depth review of research related to the biology, prognosis, natural history and therapeutic management of patients with MDS, MPN and MDS/MPN overlap.  The CME-accredited webcast of the symposium will be available online in early 2017. Interviews with some of the symposium faculty were recorded by AAMDSIF so the presenters could...

MDS Clinical Research Consortium Meets at ASH 2016

Originally Published: 12/14/2016
Just before the active program of the annual American Society of Hematology (ASH) meeting kicked in, AAMDSIF and members of the MDS Clinical Research Consortium (MDS CRC) took the opportunity to meet with partners and friends. Several pharmaceutical researchers interested in clinical research in MDS joined the MDS CRC principal investigators for refreshments and discussion at the reception we hosted. The Cleveland Clinic’s Mikkael Sekeres. M.D., co-chair of the consortium, gave a brief presentation about the history, current operations and future plans of the CRC for event attendees. The...

MDS/AML patients benefit from novel study

Originally Published: 12/08/2016
Patients who potentially could benefit most from participation in clinical trials due to poor prognoses often are not included based on eligibility criteria, such as existing medical illnesses. A novel study at The University of Texas MD Anderson Cancer Center revealed some patients with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS), who traditionally could not be considered for clinical trials, responded well and were safely treated in this setting. The study, led by Guillermo Garcia-Manero, M.D., professor of Leukemia, followed 109 patients with AML and MDS undergoing...

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, holzer@aamds.org, (301) 279-7202, x106 Alice Houk, houk@aamds.org, 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

Local TV covers AAMDSIF Peer Support Networker

Originally Published: 11/28/2016
Those who know me know that I am a big mixed martial arts (MMA) fan. Huge. MMA is a rare but growing sport that requires one person to persevere through hard work and sacrifice while relying on a team of individuals working behind the scenes to keep the fighter as healthy as possible for their next battle. Sound familiar?   So, it came as no surprise to learn that one MMA fighter is battling a rare disease and that battle is making him stronger. UFC fighter Joe Ellenberger began fighting in MMA while at the University of Nebraska at Kearney where he was studying industrial distribution and...

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 ClinicalTrials.gov. 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...

Foundation Update - November 2016

Originally Published: 11/21/2016
Foundation Update Newsletter - November 2016 PACCT+ Patient Council Has First Meeting On September 24, the AAMDSIF Patient Advisory Council on Clinical Trials (PACCT+) members gathered 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 MDS 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. Learn more...

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...