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Potocki-Lupski Syndrome Foundation, Inc. (PTLS)

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Nonprofit Overview

Causes: Health, Medical Research, Nerve, Muscle & Bone Diseases, Specifically Named Diseases

Mission: Our mission is to bring about awareness and education of this rare genetic duplication, so that we may increase research and support for families.

Results: As of this day, we have increased in numbers of those with the diagnosis from 50 to 500, and reached 40 countries, offering education and support to families. We have started speaking internationally to bring about awareness of research needs, and educate health professionals, therapists and educators working with our families. Research interests have increased to include studies on the adults and health concerns.

Target demographics: support research, raise awareness, educate and support families with this rare chromosome duplication

Direct beneficiaries per year: 300 families

Geographic areas served: the world

Programs: Research, education, awareness programs, and support.

Community Stories

1 Story from Volunteers, Donors & Supporters


General Member of the Public

Rating: 5

After receiving the diagnosis for my child, I was in shock. I found this organization, I found answers. The President of the organization was a wealth of information. She had all the answers I needed, and was able to go back to tell my doctor. I am very grateful to all at PTLS Foundation.