When the Paget Foundation was founded in 1978 as a national voluntary health agency located in New York, NY, its mission was to provide information on Paget's disease of bone to patients, family members and health professionals. Beginning in 1992, the foundation expanded its mission to include other bone disorders, including primary hyperparathyroidism, fibrous dysplasia, osteopetrosis (not the more common disease osteoporosis) and the effects of certain cancers on the skeleton.

To meet these objectives, the Foundation provides publications on all of these disorders, physician referral lists for Paget's disease, primary hyperparathyroidism, fibrous dysplasia and osteopetrosis, research grants for scientists studying Paget's disease and hyperparathyroidism and educational programs for physicians and scientists.

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Summary
Paget Foundation For Paget's Disease of Bone
and Related Disorders
Activity
2005

Service to Patients and Consumers
The Foundation continued its 27th year of service to patients with Paget's disease of bone and other bone disorders including primary hyperparathyroidism, fibrous dysplasia, the rare disease osteopetrosis and the complications of bone metastasis. The Paget Foundation website (www.paget.org) is the centerpiece of the Foundation's information outreach to patients and other consumers accompanied by 14 Foundation patient publications and the Foundation newsletter, Update which is published three times each year.

The Foundation continued its distribution of local, regional and national physician referral network lists for all of the benign bone disorders it covers. These lists are distributed by mail upon request by a patient of family member and are not available on the website or by distribution by email.

The Foundation continued its participation in the NIH Osteoporosis and Related Bone Diseases ~ National Resource Center by developing new publications and revising Resource Center/Paget Foundation joint publications developed previously.

Educating Health Professionals
In addition to educational tools for health professionals available in print and on the Foundation website, the Foundation presented the symposium Skeletal Complications of Malignancy IV (April 28-30, 2005). The 300 symposium attendees included physicians, scientists, NIH staff, representatives of pharmaceutical companies and other interested individuals. The symposium abstracts were published as a supplement of the Journal of Bone and Mineral Research (JBMR), Vol.20, Supplement 2, 2005.

The Foundation organized the symposium Paget's Disease of Bone/Fibrous Dysplasia: Advances and Challenges (January 12-14, 2006). Though the symposium took place in 2006, most of the organizing work took place in 2005.

The Foundation had an exhibited booth at the annual meeting of the American Society for Bone and Mineral Research in October in Nashville, TN. During the ASBMR meeting, the Foundation conducted the annual meeting of its U.S. and International Advisory Medical Panel and participated in other relevant meetings.

Coalitions, Research and Advocacy
The Foundation presented $10,000 research awards to two investigators studying Paget's disease of bone and primary hyperparathyroidism. Dr Noriyoshi Kurihara of the University of Pittsburgh received the Paget's disease award and Dr. Moahad Dar of Duke University received the primary hyperparathyroidism award.

Through its membership in the legislative coalition, National Coalition for Osteoporosis and Related Bone Diseases, the Foundation actively advocated for increased Federal funding for research on all bone diseases and worked with NIH staff to stimulate bone disease research interest within the NIH. The Foundation was an active participant in the Friends of the National Institute of Dental and Craniofacial Research (NIDCR) and participated in that coalition's annual lobbying day. The Foundation also participated in several other national research coalitions.

Surgeon General's Report on Bone Health and Osteoporosis
The Foundation disseminated key messages of the Surgeon General's Report, Bone Health and Osteoporosis: A Report of the Surgeon General, published in October 2004.

Governance
At its December Board of Directors meeting, the Foundation implemented its term limits policy for Directors and Officers.

Other Memberships and Affiliations
In addition to the affiliations mentioned above, the Foundation continued participation in the National Organization for Rare Disorders (NORD), the U.S. Bone and Joint Decade, the Combined Federal Campaign and Independent Charities of America.