The Max Foundation (Max) and the International PNH Interest Group (IPIG) Announce Collaboration to Improve Care and Management for People Living with Paroxysmal Nocturnal Hemoglobinuria (PNH) in Low-Resource Countries

• IPIG joins Max’s Humanitarian Partnership for Access to Critical Treatments (Humanitarian PACT) and will provide medical education and training on PNH care and management
• Max will provide access to innovative treatment as part of the multi-stakeholder collaboration focused on eradicating survival disparities in 53 low-resource countries
• People living with this rare blood disease require frequent blood transfusions, experience debilitating symptoms of fatigue, and without treatment, have a high risk of thrombosis and a shortened lifespan

SEATTLE, Washington – Dec. 18, 2024 – The Max Foundation (Max), a global nonprofit organization dedicated to accelerating health equity by delivering medication, technology, and supportive services to patients worldwide, and the International PNH Interest Group (IPIG), a professional society dedicated to enhancing and expanding professional knowledge about PNH to improve patient treatment and care, today announced a collaboration to improve outcomes for PNH patients in low-resource countries. PNH is an ultra-rare and debilitating blood disease that causes red blood cells to fragment, in addition to thrombophilia and bone marrow failure.

“We are thrilled to collaborate with IPIG to optimize outcomes for people living with PNH in low-resource countries for this debilitating condition,” said Pat Garcia-Gonzalez, CEO of Max. “Creating sustainable access to treatment requires overcoming multiple barriers in low-resource countries, and the addition of IPIG’s deep expertise in the care and management of people living with PNH gives us confidence in our ability to support hematologists in our network to diagnose and treat these patients.” 

PNH is caused by an acquired, not inherited, genetic flaw that affects how blood cells work. As a consequence, red blood cells are broken down earlier than they should be, which causes patients to pass dark-colored urine. Only about 6 per 1 million people are diagnosed with it each year. People with PNH have symptoms including fatigue, weakness, palpitations, or shortness of breath, which may be triggered by stressors like physical exertion or infection. If PNH isn’t treated, chronic hemolysis may cause severe anemia requiring blood cell transfusions, and other organ complications including kidney failure. In addition, PNH is associated with a very high risk of thromboembolism, which may affect different organs and cause potentially life-threatening complications.

“The IPIG is dedicated to improving care for individuals with PNH by advancing treatment, educating healthcare providers, and supporting research to broaden access to effective therapies. Our ultimate goal is to enhance patient care and outcomes on a global scale. This mission is best achieved through collaboration with diverse professional organizations. We are thrilled to witness a groundbreaking milestone: after a 20-year delay, specific treatments for PNH are finally becoming accessible to patients in low-resource countries. We extend our heartfelt gratitude to The Max Foundation for their tireless efforts in making this achievement possible. IPIG is proud to support this initiative by contributing to the education and training of healthcare professionals in these underserved regions,” said Antonio Risitano, MD, PhD – IPIG President and Chair.

The collaboration will initially have IPIG focusing on strengthening health systems by providing education and training, identifying other potential collaborators in low- resource countries, building capacity at medical institutions, and facilitating conversations and partnership engagement to expand access to treatment. 

The Humanitarian PACT for PNH is a collaboration among professional, nonprofit, and commercial organizations that share the commitment of Max to increase global access to treatment, care, and support for people living with this life-threatening disease. Members of the Humanitarian PACT agree to invest resources and/or their unique organizational knowledge and capabilities to support the expansion of Max’s proven treatment access model. 

About The Max Foundation

The Max Foundation is a leading global health nonprofit organization dedicated to accelerating health equity. For 27 years, Max has pioneered practical, scalable, high-quality solutions to bring lifesaving treatments and patient-centered health care to more than 100,000 people living with cancer and critical illness in low- and middle-income countries. Max believes in a world where all people can access high-impact medicines, where geography is not destiny, and where everyone can strive for health with dignity and with hope. Learn more at www.themaxfoundation.org.

About IPIG

The International PNH Interest Group (IPIG) is the only global professional society that focuses specifically on PNH and its treatment. IPIG is dedicated to enhancing and expanding professional knowledge about PNH and related disorders to improve patient treatment and care. Learn more at www.pnhinterestgroup.org

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