PNH Resources

Explore the different tools and resources available

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

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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.

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PNH Basics brochure

Find out what the risk, severity, signs, symptoms, and testing for PNH are.

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Pathophysiology of PNH brochure

Learn about the pathophysiology of PNH—from an acquired mutation to devastating consequences.

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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.

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Clinical Assessment tool

Use this tool to identify PNH patients at risk of morbidities and early mortality.

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PNH Diagnostic Reference tool

CATCH PNH earlier in high-risk patient populations and improve patient outcomes with this tool.

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Resources for your patients

PNH Patient brochure

Educate your patients on PNH disease and their role in helping to manage it with this brochure.

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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.

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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.

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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.

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

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If you have patients with PNH there is a community of experts that can help you with any questions you may have about their care. Find the right person to assist you in providing your patients with PNH with best care possible.

Talk to an expert

PNH=paroxysmal nocturnal hemoglobinuria.

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  1. Hill A, et al. Nat Rev Dis Primers. 2017;3:17028.
  2. Brodsky RA. Hematology: Basic Principles and Practice. 7th ed. Elsevier; 2018:415-424.
  3. Lee JW, et al. Int J Hematol. 2013;97(6):749-757.
  4. Schrezenmeier H, et al. Ann Hematol. 2020;99(7):1505-1514.