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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Sisters’ Hope Foundation


P O Box 12
Myerstown, PA 17067 USA



Email Address

[email protected]


The mission of Sisters’ Hope Foundation is to support and empower families impacted by HDLS/ALSP by: • educating the public to increase awareness around this rare disease • advocating for further research and funding to improve treatment options • connecting patients and families with this diagnosis to build community and support • providing financial assistance and resources to those in need Through Sisters’ Hope Foundation, we envision a world where those affected by HDLS/ALSP have support and knowledge, leading to a better quality of life and one day, the first survivor of HDLS/ALSP.

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