Facing a Lowe syndrome diagnosis and managing ongoing care can be overwhelming. Here are some resources that the Lowe Syndrome Association has either produced or gathered to help make the journey a little easier.
- Living With Lowe Syndrome. This 4th edition guide (2010) remains a foundational resource covering genetics, research, development, and family impact for 137 surveyed Lowe syndrome families — though it’s due for an update. Through our participation in Citizen Health, we’re hopeful to produce updated resources in the coming months.
- Glossary of Medical Terms for Lowe Syndrome. This glossary is intended to help explain many words that are related to the care and management of a person with Lowe syndrome.
- Understanding Bloodwork in Lowe Syndrome. Created in partnership with Dr. Eileen Brewer, this guide was intended to help families understand what results are generally seen in an individual with Lowe syndrome.
- Renal Fatigue & Medical Needs in Lowe Syndrome. A Reference for School Nurses and IEP Teams
- Individualized Education Program (IEP) and Health Plan (IHP) Addendum Template for Renal Fatigue. Families can download this resource and personalize it with your child’s name prior to sending to your school team.
Stay tuned for more resources from the Lowe Syndrome Association.
External Resources
The LSA does not specifically endorse any of the material on these websites and does not warrant the accuracy or completeness of any information contained therein. These links are provided for informational purposes only.
- Undivided — Support for families raising kids with disabilities (Geared towards California families, but they have many general resources as well).
- May We Help – Provides unique and critical services to Individuals, organizations, and the community
- Global Genes – Allies in Rare Disease
- Specific to Lowe Syndrome
- NORD – National Organization for Rare Disorders
- NIH – National Library of Medicine, Gene Reviews
- GARD – Genetic & Rare Disease Information Center (part of the NIH): Lowe syndrome information.
- Citizen Health Guide to Lowe Syndrome
- General Information on Rare Diseases
- FDA – Rare Diseases at FDA
- GARD – Genetic & Rare Disease Information Center
- Rare Diseases Europe
- Additional Resources
- Brain and Tissue Bank. A national brain-tissue donation program that Lowe Syndrome families can use to contribute post-mortem tissue for research into the disease. Approximately 8 families have contributed to this program so far.