Our History | Aplastic Anemia and MDS International Foundation

Our History

Over the years, this special community has helped each other and loved ones battle aplastic anemia, MDS and PNH.

Amidst all of our individual stories, we have witnessed moments of courage and a lifetime of hope with our fundamental wish being to see a future where bone marrow failure disease is treatable.

1983

Orphan Drug Act Bill is approved and President Reagan signs into law in January, 1983.

Parents of young aplastic anemia patient establish the Aplastic Anemia Foundation with the help of physicians from Johns Hopkins University.

1984

Orphan Drug Act Amendment: rare disease is defined as fewer than 200,000 diagnosed annually.

1989

Research Icon

Research Grant Award Program is Established.

1993

The Aplastic Anemia Foundation establishes a Medical Advisory Board. Founding members who are still serving include Dr. Neal Young and Dr. Joachim Deeg.

1994

Foundation expands its scope to create educational materials and a volunteer network for MDS patients and families.

1997

Foundation begins to also support PNH patients and families.

1999

Families Icon

European Union adopts Orphan Law.

14 research grants awarded since 1989.

2000

NIH Logo

NIH Establishes clinicaltrials.gov

Foundation officially changes its name to the Aplastic Anemia and MDS International Foundation (AAMDSIF).

2002

Rare Diseases Act signed establishing the NIH Rare Disease Clinical Research Network.

First Patient and Family Conference held in Denver, Colorado.

2004

FDA Logo

FDA approves Vidaza® (azacitidine) for use in patients with subtypes of MDS.

2005

Symposium 2005

FDA approves Revlimid® (lenalidomide) as a therapy for the treatment of myelodysplastic syndromes (MDS).

FDA approves Exjade® (deferasirox) as a once daily oral iron chelator approved for chronic iron overload due to blood transfusion dependent thalassemia.

First International Scientific Symposium is held in the greater Washington, D.C. area with world-renowned faculty.

2006

Microscope Photo

FDA approves Dacogen™ (decitabine) for the treatment of patients with MDS.

2007

FDA approves Soliris® (eculizumab) as a therapy for paroxysmal nocturnal hemoglobinuria (PNH).

2008

First collaboration with Cleveland Clinic at the annual American Society of Hematology conference.

2009

Award Photo

Inaugural March for Marrow Indianapolis is organized. Previously called Hope, Steps and a Cure.

30 research grants awarded since 2000.

2010

Rare disease office established at the FDA: Center for Drug Evaluation and Research, Office of New Drugs.

2011

MDS Update Newsletters

The MDS Update newsletter is published connecting patients and families with news, research, and expert opinions.

2012

CRC Logo

The MDS Clinical Research Consortium is established with funding received from the Edward P. Evans Foundation. Members include Cleveland Clinic Taussig Cancer Institute, Dana-Farber Cancer Center, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, H. Lee Moffitt Cancer Center and Research Institute, MD Anderson Cancer Center, Weill Cornell Medicine Leukemia Program.

2013

Nurses Conference

AAMDSIF presents at the Oncology Nurses Society's annual conference.

2014

FDA approves use of Promacta® (eltrombopag) for patients with severe aplastic anemia.

2015

Nurses Conference

AAMDSIF establishes The Patient Advisory Committee for Clinical Trials (PACCT+) with a grant received from The Patient Centered Outcomes Research Institute.

2016

AAMDS Web Site

AAMDSIF re-branding with new logo, updated education materials and refreshed website.

2017

Symposium in Mexico

AAMDSIF held its first International Regional Bone Marrow Failure Disease Symposium in León, Guanajuato, Mexico.

2018

MarrowCommunity is launching to allow patients and caregivers to join disease-specific forums, connect with others, ask questions, get support, and share their stories, challenges and triumphs.

Since 1989, AAMDSIF has awarded 92 research grants focused on bone marrow failure disease totaling more than $5M.

Now

Now more than 35 years later, the Foundation continues its work serving as the patient voice in advocacy and partnering with the pharmaceutical industry. We provide education and information to health professionals and patients diagnosed with aplastic anemia, MDS, PNH, AML, CLL, CMML, GVHD, MF, MPN and PRCA.