2010 Patient Calendar of 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 PNH patients and their families. At these events, patients 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.

Baltimore
When: March 11-12, 2010

Portland, OR
When: April 9-10, 2010

Cincinnati
When: April 23-24, 2010

Boston
When: May 7-8, 2010

Denver
When: June 4-5, 2010

Chicago
When: June 25-26, 2010

Los Angeles
When: July 23-24, 2010

Nashville
When: August 13-14, 2010

Ann Arbor
When: September 10-11, 2010

New York City
When: September 24-25, 2010

Atlanta
When: October 8-9, 2010

Phoenix
When: November 5-6, 2010

 

Annual Patient & Family Conference
Sponsored by the AA&MDS International Foundation

Each year, AA&MDSIF holds a Patient & Family Conference bringing together patients and their families with some of the world's most distinguished medical experts in bone marrow disorders, including PNH. In addition to medical presentations, attendees have the opportunity to meet other patients and families in specially designed workshops as a way to connect with and support others affected by PNH.

Save the date. More information will follow.

Washington, DC
When: July 10-13, 2010

 

 





IMPORTANT SAFETY INFORMATION

WARNING: SERIOUS MENINGOCOCCAL INFECTIONS

Soliris increases the risk of meningococcal infections. Meningococcal infection may become rapidly life-threatening or fatal if not recognized and treated early

  • Vaccinate patients with a meningococcal vaccine at least 2 weeks prior to receiving the first dose of Soliris; revaccinate according to current medical guidelines for vaccine use
  • Monitor patients for early signs of meningococcal infections, evaluate immediately if infection is suspected, and treat with antibiotics if necessary

The effect of anticoagulant withdrawal during Soliris treatment has not been studied. Therefore, treatment with Soliris should not alter anticoagulant management.

Soliris is generally well tolerated. The most frequent adverse events observed in clinical studies were headache, a runny nose (nasopharyngitis), back pain, nausea, and tiredness (fatigue).

Please see full prescribing information for SOLIRIS, including boxed WARNING regarding serious meningitis.