A few special places to go...... that you might otherwise not find. |
Dr. Key at MUSC – Dr. Key has been giving hope for many years to those afflicted with this condition. He has developed the Difficult Pediatric Dilemmas Clinic to provide in-depth consultation for many disorders: Diabetes, Metabolic Diseases, Calcium Disorders, Bone Diseases, Thyroid Diseases, Growth Disorders, Pubertal Diseases, Osteoporosis, and Osteopetrosis.
Lori Davis' site – Lori has devoted a whole section of her personal web page to Autosomal Dominant Osteopetrosis.
Osteopetrosis Support Trust - OST
Mrs Margaret Wright
10 Cumberland Avenue
Fixby
Huddersfield HD2 2JJ
England
Tel 01484 545974
Osteopetrosis Support Trust site – Originally FROST (Friends of the Osteopetrosis Support Trust) They are a registered charity focused toward Autosomal Recessive Malignant Osteopetrosis.
Australia Support Group Association (ASGA)
Dianne Petrie
66 Albion St.
Surry Hills, NSW 2010
Australia
(02) 9211 1462
This isn't an osteopetrosis group, but we believe that there may be one in Australia. Contact this group for leads.
If you would like to nominate other sites, email us at research
Sites your search engine will find......but worth including nevertheless. |
Med Help International - The Virtual Medical Center for
Patients
The Paget Foundation
120 Wall Street, Suite 1602
New York, NY 10005-4001
Tel: 212-509-5335 Fax: 212-509-8492
Toll-free: 800-23-PAGET = 800-237-2438
E-mail: PagetFdn@aol.com Email the Paget Foundation
This is an great initial source, but an organization in the traditional sense. Information and services are provided for members. Consider making a donation. It is a worthwhile foundation.
Website: For Paget's Disease of Bone and Related Disorders
National Institute of Health
Osteoporosis and Related Bone Diseases~National Resource Center
1232 22nd Street, NW
Washington, DC 20037-1292
Telephone: 202-223-0344
Toll-free: 800-624-BONE
Fax: 202-293-2356
TTY: 202-466-4315
E-mail: NIH ORBD~NRC Email the NIH
To obtain a very useful bibliography from the NIH ORBD~NRC, use the link below,
then fill out the form and select "b154i: Osteopetrosis".
Be prepared for days of reading.