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Home > News from MSAA > Identifying and Meeting the Needs Associated with Primary-Progressive MS
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Identifying and Meeting the Needs Associated with Primary-Progressive MS

July 15, 2011

An informative article on primary-progressive multiple sclerosis (PPMS) appears in the summer 2011 issue of the International Journal of MS Care. "Meeting the Needs of People with Primary Progressive Multiple Sclerosis, Their Families, and the Health-Care Community" is part of a collaborative project between the Multiple Sclerosis Association of America (MSAA) and the National Multiple Sclerosis Society (NMSS) to recognize the needs of this specific population and to create programs to help answer these needs.

MSAA Chief Operating Officer Robert Rapp, MAPA, co-authored this article, along with Nancy J. Holland, EdD, RN; Diana Schneider, PhD; and Rosalind C. Kalb, PhD. Mr. Rapp notes, "MSAA is proud to collaborate with the NMSS to better serve the PPMS community. Individuals with this less-common form of MS, along with their family members, have long been underserved. By working with MS specialists and other professionals, as well as individuals with PPMS and their care partners, our organizations have been able to bring greater awareness and design new programs, all in an effort to address the specific needs of this community. We are pleased with the outcome of our research, much of which is summarized in this newly published article."

The article includes information about the unique characteristics and demographics of PPMS and identifies significant needs and service gaps. Both medical and psycho-social needs are assessed. Psychological changes and challenges, quality-of-life needs, as well as family and caregiver challenges, are among the many issues that are highlighted and discussed.

Another result of MSAA and NMSS's collaborative attention to the unique needs of individuals with PPMS is the publication of Primary Progressive Multiple Sclerosis: What You Need to Know. Co-authored by MSAA's Chief Medical Officer Dr Jack Burks, this 166-page book is the first published book dedicated entirely to the PPMS population. A free copy of this book may be ordered online from MSAA. A free copy may also be requested by calling MSAA at (800) 532-7667.

Last Updated on Tuesday, 29 January 2013 11:00