The Assistance Fund, an independent charitable patient assistance foundation that helps patients and families facing high out-of-pocket medical costs, today announced the launch of a new financial assistance program for individuals living with Paroxysmal Nocturnal Hemoglobinuria (PNH).
PNH is a rare acquired blood disease that leads to premature destruction of red blood cells. PNH is caused by mutations in the PIGA gene after conception, which leads to defective blood cells.1 This mutation occurs in hematopoietic stem cells, the cells that develop into red and white blood cells and platelets.1 Individuals with PNH are at an increased risk of developing repeated blood clots and bone marrow dysfunction.1
PNH is a condition with a variety of symptoms that can impact an individuals life in many ways, including financially, said Mark P. McGreevy, President and CEO, The Assistance Fund. At The Assistance Fund, it is important for us to recognize and support those living with rare and ultra-rare conditions like PNH. The introduction of this program takes us one step closer to helping even more individuals living with rare diseases cover the costs associated with their treatment.
Symptoms of PNH can manifest differently in each individual. Some experience few or no symptoms while others experience a number of debilitating symptoms such as fatigue, recurring infections, bone marrow dysfunction, excessive bleeding and blood in the urine.2,3 PNH is an ultra-rare disease, impacting around 1 or 2 people per million; the average age of diagnosis is 35-40 years old.3 The median survival rate following a PNH diagnosis is ten years.3
To learn more or determine eligibility for financial support, individuals should visit tafcares.org or call (855) 308-0212 to speak with a patient advocate.
A list of all the programs available at The Assistance Fund can be found on the website tafcares.org.
About The Assistance Fund
The Assistance Fund is an independent charitable patient assistance foundation that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles and other health-related expenses. The Assistance Fund currently manages more than 50 programs “ each of which covers the FDA-approved medications that treat a specific disease. Since its founding in 2009, The Assistance Fund has helped more than 78,000 adults and children access the medicines they need to stay healthy or manage a chronic condition. To learn more about The Assistance Fund, or for information on how to donate, please visit tafcares.org.
1. Paroxysmal Nocturnal Hemoglobinuria. National Organization for Rare Diseases. Retrieved from: https://rarediseases.org/rare-diseases/paroxysmal-nocturnal-hemoglobinuria/.
2. Paroxysmal nocturnal hemoglobinuria. U.S. National Library of Medicine, Genetics Home Reference. Retrieved from: https://ghr.nlm.nih.gov/condition/paroxysmal-nocturnal-hemoglobinuria#genes.
3. Paroxysmal Nocturnal Hemoglobinuria (PNH). The Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins Medicine (associated with Johns Hopkins University). Retrieved from: https://www.hopkinsmedicine.org/kimmel_cancer_center/centers/bone_marrow_failure_disorders/paroxysmal_nocturnal_hemoglobinuria.html.