The ISMRD Library

Image of a child reading in the ISMRD library.

ISMRD's Library is open 24/7 for our visitors to read information online or to download to their own computer for their permanent records. Please check back often as we add new material and resources to our collection.

Our documents are available in Word or Acrobat formats, as indicated. To view an Adobe Acrobat file you must have the free Acrobat Reader installed on your computer. To obtain the latest version simply download it from Adobe's website. Word files require Microsoft Word to be installed on your system. Microsoft Word comes bundled with most computers as part of the Microsoft Office suite. For more information please visit Microsoft's Office website.

A. ISMRD Organizational Documents

Document Name Format Description
US Internal Revenue Service 501 (c)(3) Determination Letter Word document. Certification of ISMRD's charity status in the United States: April 6, 2004.
Bylaws Word document. ISMRD's Organizational Bylaws created in March 1999.

B. Glycoprotein Storage Disease Fact Sheets & Publications

Document Name Format Description
Biphosphonate Therapy In Mucolipidosis Word document. Publication relating the potential benefits of Biphosphonates for treating Mucolipidosis. Written by Prof. David Sillence, MD FRACP
Intravenous Pamidronate Treatment in Mucolipidosis II/III PDF document. This informative article by Jenny Noble, mother of two children with ML III, addresses many of the salient points about this emerging therapy for Mucolipidosis.
Pamidronate Infusion Guidelines for ML PDF document. Instructions on administering Pamidronate authored by Prof. David Sillence.
Medical Alert for Parents of Children with I-Cell Disease PDF document. Important information from the Greenwood Genetic Clinic regarding anasthesia in children with Mucolipidosis II
Osteodystrophy of Mucolipidosis Type III PDF document. A published paper detailing a study conducted on two New Zealand children using Pamidronate as a therapy for Mucolipidosis. Co-written by Jenny Noble, a member of ISMRD's Board of Directors and Prof. David Sillence, MD FRACP.
Psychiatric Symptoms In Alpha Mannosidosis PDF document. This paper is the result of a study of 45 patients with Alpha Mannosidosis by Dr. Dag Malm, MD, PhD. It is reprinted with permission of the author and the Journal of Intellectual Disability Research.
Sarah's Journey With ML III Word document. The story of how one young lady has coped with her diagnosis.
Feeding and Nutrition in Children with ML2 PDF document. Suggestions for feeding a child with I-Cell Disease – A family experience.
Mucolipidosis III Gamma PDF document. This paper outlines the natural history of mucolipidosis gamma patients.
Natural History and Osteodystrophy of MLII and III PDF document. This paper is the result of a study done on 25 patients with ML II and ML III to assess the natural history and impact of the secondary bone disease observed in patients with mucolipidosis (ML II and ML III).
Allogeneic SCT for alpha-mannosidosis
PDF document. This paper is the result of a multi-institutional analysis that describes 17 patients with Alpha Mannosidosis that were diagnosed at a median of 2.5 (1.1–23) years and underwent HSCT at a median of 3.6 (1.3–23.1)years. ISDMRD played a significant role in this project by ensuring that all Alpha Mannosidosis families whose children went through bone marrow transplant were able to take part in this study.

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