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Annual Meetings are More than a Patient-Disease Experience: Caregivers Get Support, Too!

This year’s annual meeting in Philadelphia was again a huge success because of the tremendous amount of information, knowledge, research and hope made available to patients and caregivers. It was also a family reunion for some of the regular attendees strengthening the bond and giving arenewal of commitmentbetween existing patients. It’s really fantastic and encouraging event. It is a wonderful feeling to know that some patients in partial remission make the extra effort to attend these meetings thereby giving support to our new friends.

The different venues for the IPPF Annual Patient/Doctor Meeting give us an opportunity to visit different states each year. We really enjoy going to these conferences because it is such an amazing source of face-to-face interaction. We schedule attendance to the meeting as a family pilgrimage. It also brings back the core values and keeps us aligned with the reality of this disease. There is always something new to learn, and it’s all made possible by the great and generous people who have been working for us on our rare disease research projects.

As a patient, it connects to existing patients and also gives the opportunity to share successes and disappointments. After six years of trying to stabilize the disease, it gives a sense of confidence to be able to give advice and information to new patients. Knowledge is power and the more we learn about our disease, the more we would be able to handle and control our flares.

As a caregiver, it realigns the commitments necessary to continue to support your loved ones and to share learnings with new caregivers.

We recognize and thank everyone involved.

Napisano w Issue 61 - Summer 2010


The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.