PNH Community Calendar

PNH patient portrayal

Check regularly for PNHA disease where red blood cells are created without a protective protein. This causes them to burst (a process called hemolysis) and can result in serious health problems. Signs and symptoms include stomach pain, difficulty swallowing, anemia, shortness of breath, and fatigue. Life-threatening complications from PNH include blood clots, kidney failure, and damage to organs. events around the country where you can meet others living with PNH or who are caring for loved ones with the disease. Learn more about PNH and share stories of success and hope.

PNH Patient Support Group Meetings
Sponsored by the National Organization for Rare Disorders (NORD)

Throughout the year, the National Organization for Rare Disorders (NORD) hosts regional meetings around the country for people with PNH and their families. At these events, people living with PNH come together in small groups to learn more about their disease from a medical expert specializing in PNH and provide support to one another. There is no cost to attend.

For more information and to RSVP, please call Susan Olivo at NORD, 203.744.0100, or visit www.rarediseases.org/about/contact-us.

NORD patient support group meetings

Living With Aplastic Anemia, MDS, or PNH Patient & Family Conferences
Sponsored by the AA&MDS International Foundation

In 2015, the AA&MDS International Foundation will host a series of Patient & Family Conferences for people living with Aplastic AnemiaAnemia that results from the failure of the bone marrow to produce red and white blood cells as well as platelets., MDSA condition in which there’s a problem with the way bone marrow makes blood cells. A small percent of PNH patients also have MDS. and PNH. For people with PNH, each daylong event will feature nationally recognized PNH experts talking about the most current thinking on PNH and its treatment. A special lunch program will focus on how to become a stronger advocate for your best healthcare. Living Well sessions on topics such as managing fatigueTiredness, trouble concentrating, dizziness, and weakness to the point where even normal, everyday activities become a struggle. In PNH, fatigue is often out of proportion to the amount of anemia, as measured by hemoglobin, because it is affected by hemolysis. and effectively coping with serious illness are also included. This is a time to connect with other people living with PNH, to share your experiences, and to give and receive support with others like you. There is no cost to attend. At the same time, sessions focusing on AA and MDS will take place at each conference.

To see conference agendas and register, go to www.AAMDS.org/conferences or call the toll-free registration line at 855.595.7155.

AA&MDSIF PNH patient & family conferences

Annual Walk for PNH
Sponsored by the PNH Research & Support Foundation

The Annual Walk for PNH, held each year in New York City near the end of September, is the largest fundraiser in the United States dedicated to PNH.

Watch for more information about this popular community event on www.pnhfoundation.org.

Ninth annual walk for PNH

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PNH Patient Victor video

Find out how a PNH support group helped Victor when he was struggling with his PNH.

PNH Patient Batina video

Learn more about how hemolysis, or the breakdown of red blood cells, leads to increased levels of the enzyme LDH, as described by Dr. Ellen W. Friedman, a blood and blood diseases specialist.

Living with PNH can be challenging.
A registered nurse from OneSource™ can help.