Hear from a PNH expert
Take a closer look at PNH with Dr Anita Hill
Dr Hill explains what causes this rare disease, how part of your body’s own immune system plays a role, and certain complications to look out for.1-4
Learn more about PNH
Resources for you
PNH Disease Education brochure
Get a comprehensive look at the PNH disease, its devastating consequences, and tools and information on PNH patient identification.
PNH Basics brochure
Find out what the risk, severity, signs, symptoms, and testing for PNH are.
Pathophysiology of PNH brochure
Learn about the pathophysiology of PNH—from an acquired mutation to devastating consequences.
Risk of Thrombosis brochure
Take a closer look at the dangers of chronic terminal complement–mediated intravascular hemolysis and how to identify patients at risk.
Clinical Assessment tool
Use this tool to identify PNH patients at risk of morbidities and early mortality.
PNH Diagnostic Reference tool
CATCH PNH earlier in high-risk patient populations and improve patient outcomes with this tool.
Resources for your patients
PNH Patient brochure
Educate your patients on PNH disease and their role in helping to manage it with this brochure.
Lab Tracker tool
Help your patients manage their PNH. This tool will help them understand their lab results and keep track of them to share with you between visits.
Symptom Tracker tool
Your patients can be active in their care. Have them track their symptoms so they can have a meaningful discussion with you on their progress.
Online resources
The PNH Patient Community
The PNH Patient Community is a patient support site in partnership with National Organization for Rare Disorders (NORD) and the Aplastic Anemia & MDS International Foundation (AAMDSIF). This site is dedicated to providing PNH patients access to other patients as well as many free events offered throughout the country.
National Organization for Rare Disorders (NORD)
NORD is dedicated to helping improve the lives of people with rare diseases through advocacy and by serving as a clearinghouse for news, information about research and grants, and patient services and resources.
The Aplastic Anemia & MDS International Foundation (AAMDSIF)
AAMDSIF is a nonprofit patient organization that serves as a resource for patient assistance, advocacy, and support. The organization supports research to find treatments and potential cures for aplastic anemia (AA), myelodysplastic syndromes (MDSs), and related bone marrow diseases including PNH. The AAMDSIF website provides educational materials and medical information about AA, MDS, and PNH.
National Institutes of Health (NIH)
On this site, you can search a collection of clinical studies being conducted by the NIH.
PNH Research and Support Foundation
The PNH Research and Support Foundation is an organization dedicated to raising funds for PNH research and helping families with disease-related expenses not covered by insurance.
PNH Support Group
The PNH Support Group is an online network of over 400 individuals who are living with PNH, or care for someone with PNH, and who are willing to share personal experiences. Other resources include frequently asked questions, live chat forums, current news threads, a PNH glossary, key links, and educational materials.
https://rarediseases.org/rare-diseases/paroxysmal-nocturnal-hemoglobinuria/#supporting-organizations
ClinicalTrials.gov
On this site, healthcare professionals and others can review regularly updated information about federally and privately supported clinical research in human volunteers. This site also gives you the ability to research information about a trial’s purpose, who may participate, locations, and contact information.
NORD and the NORD logo are registered trademarks of the National Organization for Rare Disorders. NORD is a registered 501(c)(3) charity organization.
PNH publications
About PNH
- Ueda Y, et al. Int J Hematol. 2018;107(6):656-665.
- Shammo JM, et al. Blood. 2015;126(23):3264.
- Röth A, et al. Eur J Haematol. 2018;101(1):3-11.
- Schrezenmeier H, et al. Haematologica. 2014;99(5):922-929.
- Almeida AM, et al. Intern Med J. 2017;47(9):1026-1034.
- Jalbert JJ, et al. Blood. 2019;134(suppl 1):3407.
- Luzzatto L, Gianfaldoni G. Int J Hematol. 2006;84(2):104-112.
- de Latour RP, et al. Blood. 2008;112(8):3099-3106.
- Rachidi S, et al. Eur J Intern Med. 2010;21(4):260-267.
- Rosse WF, et al. Hematology Am Soc Hematol Educ Program. 2004;48-62.
- Socié G, et al. Lancet. 1996;348(9027):573-577.
- Hillmen P, et al. N Engl J Med. 1995;333(19):1253-1258.
Clinical manifestations of PNH
- Lee JW, et al. Int J Hematol. 2013;97(6):749-757.
- Hill A, et al. Br J Haematol. 2012;158(3):409-414.
- Rother RP, et al. JAMA. 2005;293(13):1653-1662.
- Weitz IC. Thromb Res. 2010;125(suppl 2):S106-S107.
- Hill A, et al. Nat Rev Dis Primers. 2017;3:17028.
- Clark DA, et al. Blood. 1981;57(1):83-89.
- Jang JH, et al. J Korean Med Sci. 2016;31(2):214-221.
Diagnosis of PNH
- National Comprehensive Cancer Network. Published January 13, 2022. Accessed March 31, 2022. https://www.nccn.org/professionals/physician_gls/pdf/mds.pdf
- Dezern AE, Borowitz MJ. Cytometry B Clin Cytom. 2018;94(1):16-22.
- Sutherland DR, et al. Cytometry B Clin Cytom. 2018;94(1):23-48.
- Illingworth A, et al. Cytometry B Clin Cytom. 2018;94(1):49-66.
- Oldaker T, et al. Cytometry B Clin Cytom. 2018;94(1):67-81.
- Schrezenmeier H, et al. Ann Hematol. 2020;99(7):1505-1514.
- Parker CJ. Hematology Am Soc Hematol Educ Program. 2016;2016(1):208-216.
- Borowitz MJ, et al. Cytometry B Clin Cytom. 2010;78(4):211-230.
Monitoring of PNH
References
- Hill A, et al. Nat Rev Dis Primers. 2017;3:17028.
- Brodsky RA. Hematology: Basic Principles and Practice. 7th ed. Elsevier; 2018:415-424.
- Lee JW, et al. Int J Hematol. 2013;97(6):749-757.
- Schrezenmeier H, et al. Ann Hematol. 2020;99(7):1505-1514.