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Join Our Community
About HSAN1E Society
HSAN1E Society is a patient advocacy organization founded by members of the Lindgren-Condensa family. HSAN1E had been devastating the Lindgren-Condensa family for over four generations, but was most often misdiagnosed. It wasn’t until 2013 that HSAN1E was finally properly diagnosed. It was then the surviving members decided to form a nonprofit organization that would help and support families affected by this ultra-rare disease.
HSAN1E Society is dedicated to helping families affected by HSAN1E, and being a catalyst of hope and change.
Join the Community
The HSAN1E Society community is open to anyone who has been affected by the disease or is interested in learning more. The community shares the latest news and medical research related to HSAN1E, and offers support and understanding to individuals and families that are working through their pain and suffering.
We welcome you to join us by submitting your contact information on the form below, or by connecting with us through our social media pages. We respect your right to privacy and all information is held in strict confidence.
Help Make a Difference:
It is projected that 90% of individuals who die of HSAN1E don’t even know they have the disease. One of HSAN1E Society’s goals is to help fund genetic testing for individuals who desperately need a diagnosis. Just by getting a diagnosis individuals suffering from HSAN1E will be eligible to receive services and the medical care that they so desperately need. Your donations will help fund testing for those individuals.
Donations will also help fund important and groundbreaking research. Currently HSAN1E Society is in contact with a group of researchers from the Mayo Clinic in Minnesota. They are working diligently on this very rare and deadly disease. In addition to understanding more about HSAN1E, the disease process and the gene that causes it, they hope to one day develop therapies for those families that are affected.Tooltip Text