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About The Lowe Syndrome Association

In 1983 a handful of parents founded the Lowe Syndrome Association (LSA). The LSA is an international, voluntary, non-profit organization made up of parents, friends, professionals, and others who are interested in Lowe syndrome, a rare genetic condition that almost always affects only boys.

LSA New York Fundraiser

Jerman Family hosts another NYC fundraiser for the Lowe Syndrome Association in honor of James’s 21st Birthday. All proceeds benefit Medical Research
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LoweLight: one day

The first time one of my son’s many medical specialists asked how I was doing, I began describing his daily and medical ups and downs. She stopped me mid-sentence. “NO, how are YOU doing?” I suddenly began fighting back the tears that threatened to expose me. I chose to edit my gut reaction: “one minute […]

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JOIN THE LSA

Our mission is to help families connect with each other. Since 1983 we've grown from 15 families to over 225 families in 37 states and 26 countries. In addition to families, the LSA has over 261 members who are relatives, friends and professionals. This video was created by a parent and describes why parents choose to become members of the LSA.

MORE ABOUT MEMBERSHIP

FUNDRAISE FOR THE LSA

Over the years, the LSA has benefited greatly from the enthusiasm and dedication of many members who have organized fund-raising events and found other creative ways to help raise money. Without their help, we would not have been able to achieve many of our accomplishments, especially in the area of medical research.

MORE ABOUT FUNDRAISING
LSA IN PARTNERSHIP WITH

Coordination of Rare Disease Patient Registry

If you or a loved one has been diagnosed with Lowe syndrome, you can make an important contribution to future research! Although the registry is currently available only in English, you may receive help from a trusted physician or family member to enter your information in English.

Questions?

View our Q&A here.

Please contact CoRDS:
cords@sanfordhealth.org
1-877-658-9192

For New Patients

ENROLL

For Current Registrants

UPDATE YOUR INFO

For Researchers with IRB Approval

RESEARCHERS

Watch a Video About CoRDS

WATCH

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