Formal Statement Regarding Outside Organizations

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POSTED
July 28, 2020

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The Glanzmann’s Research Foundation (GRF), a 501(c)(3) nonprofit corporation, has a mission to increase awareness of Glanzmann’s Thrombasthenia, provide a network of support for families navigating a Glanzmann’s Thrombasthenia diagnosis, and to raise funds for a cure.

We would like to formally address the increase in conferences, events, and programs that are being marketed towards the GT community. The GRF will only recognize and recommend organizations that are strictly non-profit and/or help to directly fund curing this rare one-in-a-million disorder that we deal with daily.

If an organization is not recommended or recognized by The Glanzmann’s Research Foundation, we ask that you do your research and make educated decisions about participating in such programs. Unrecognized organizations many times provide faulty or dated information or are for-profit organizations, where the proceeds do not go directly to the funding of the cure for Glanzmann’s Thrombasthenia.

We do not recommend or endorse any specific treatment plan as everyone’s journey with GT is unique and there is no one size fits all treatment. We request all patients discuss any treatment plan with their personal physician.

You all have the choice of which events and organizations to participate in to become more educated about your disorder. We ask that you make educated decisions about the organizations and events you choose to participate in, and if you do have questions about a certain event or organization please reach out to The GRF to assist you in your decision making.