ASH Hosts Patient Advocates Reception

Peter Emanuel, MD

2010-09-01

On May 24, ASH hosted the annual Patient Advocates Reception in Bethesda, MD. This reception was held in conjunction with the National Heart, Lung, and Blood Institute’s (NHLBI) Public Interest Organization Conference. As chair of the Committee on Communications, I represented ASH, along with several members of the ASH staff. Patient advocate groups in attendance represented a wide swath of hematologic diseases including:

  • American Autoimmune Related Diseases Association
  • Aplastic Anemia & MDS International Foundation
  •  Barth Syndrome Foundation
  • Daniella Maria Arturi Foundation
  • Churg Strauss Syndrome Association
  • Hermansky-Pudlak Syndrome Network
  • National Blood Clot Alliance
  • National Hemophilia Foundation
  • Platelet Disorder Support Association
  • Pulmonary Hypertension Association
  • Vasculitis Foundation

These attendees were informed about the mission and background of ASH, the numerous ASH resources and services available to their constituents, and the ways their organizations can interact with ASH. Following this introduction, Dr. Keith Hoots, director of the Division of Blood Diseases and Resources at NHLBI, highlighted NHLBI’s relationships with various patient groups. A number of other representatives from NHLBI were present including the Acting Director of NHLBI, Dr. Susan Shurin.

This reception was initiated four years ago, following a roundtable meeting of patient advocate groups, during which the advocates expressed a desire to have a venue for networking and exchanging ideas. The Committee on Communications has recently re-affirmed that this is an excellent venue where ASH can reach out to these patient groups while also providing an informal environment for them to interact with one another.

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