FOR IMMEDIATE RELEASE
Ilana Ostrin
Senior Director of Public Relations and Communications
iostrin@hemophilia.org
212-328-3769
NHF Assumes Leadership of the American Plasma Users Coalition
The organization’s public policy representatives offer new perspectives in the mission for blood and product safety.
NEW YORK - The new year ushers in new progress for patient advocacy as NHF assumes leadership of the American Plasma Users (APLUS) coalition. Vice President of Public Policy Nathan Schaefer assumed Chair of the Coalition when the new U.S. Congress began on January 3, 2023. These efforts within APLUS will be assisted by NHF Government Relations Specialist and vonWillebrand's disease and Glanzmann's Thrombasthenia patient Matt Delaney.
The APLUS coalition is an alliance of national patient organizations created to address the unique needs of patients with rare diseases who use lifesaving plasma protein therapies.
Schaefer is eager to use his experience in the public policy world to advance the work of APLUS in leading all aspects of blood and product safety. His term as Chair will last until the end of the 118th Congress in 2025.
“The bleeding disorders community has a devastating and complicated history with the way in which our products were manufactured in decades past. Thousands of lives were lost and ever since, we have been the guardians of blood and product safety,” said Schaefer. “We now have a unique opportunity to apply those indelible experiences to the safety of thousands of ours and other patients that rely upon the safety of plasma-derived products. This is especially timely for our community as advances in science have contributed to new and emerging therapies that patient populations are carefully considering, without forgetting lessons learned from our past.”
Together, APLUS represents more than 125,000 Americans living with chronic disorders dependent upon plasma protein therapies for their daily living. The coalition believes that plasma collection regulations should always prioritize the safety of both the donor and the eventual plasma user.
The organizations representing these patients also share a common desire to ensure that patient voices are heard when relevant public policies, regulations, directives, guidelines, and recommendations affecting access to safe and effective therapies and treatments are considered.
In addition to NHF, some of the other members of APLUS include:
- Immune Deficiency Foundation
- Hemophilia Federation of America
- Alpha-1 Foundation
- Jeffrey Modell Foundation
- The Coalition for Hemophilia B
- GBS-CIDP Foundation International
APLUS is proud to honor plasma donors as heroes. On behalf of the many people living with rare, complicated diseases, APLUS thanks all plasma donors for their dedication to helping others. Without medicines created from source plasma, many patients represented by APLUS member organizations would not have the lives they are currently living now.
To learn more about the plasma-using community, visit each member organization’s website to learn about each community and their work to help patients live their best lives while using plasma-derived medicines.
To learn more about the APLUS Coalition, visit https://www.plasmahero.org/news/american-plasma-users-coalition.
Those with questions about NHF’s new role within APLUS are encouraged to contact communications@hemophilia.org.
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For 75 years, The National Hemophilia Foundation (NHF) has championed research, education, and advocacy for inheritable blood disorders. NHF is dedicated to finding better treatments, preventative measures, and cures for inheritable blood disorders. Founded by patients in 1948, NHF’s impactful programs and initiatives are made possible through the support of a nationwide network of chapters, as well as individuals, partners, and a cooperative agreement with the Centers for Disease Control and Prevention (CDC). Learn more at hemophilia.org.
