Upcoming events:

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

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. Meals and hotel accommodations are included.

For more information and to RSVP, please call Susan Olivo at NORD, 203-744-0100, or visit www.rarediseases.org/about/contact-us.

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

In 2012, AA&MDS International Foundation will host six Patient & Family Conferences for people living with Aplastic Anemia, MDS, and PNH. For people with PNH, each day-long 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 fatigue 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, and breakfast and lunch are included. Parallel events 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.

Seventh Annual Walk for PNH
Sponsored by the PNH Research & Support Foundation
The Seventh Annual Walk for PNH is the largest fundraiser in the United States dedicated to PNH. Watch for more information about this popular community event on www.pnhfoundation.org.

Please check back soon for updates.

Find support programs and resources.
PNH can be a scary disease. But, even though it's rare, you are not alone.
There are others living with PNH, just like you.

Find support every step of the way.
Whether you are learning more about PNH, exploring PNH management options, or already addressing PNH,
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