Currently, we do not have the data from a large enough sample of patients to make the case for funding the search for a cure to Sarcoidosis. As a rare disease, it receives little attention from the pharmaceutical industry or NIH. Furthermore, there are currently no clinical studies underway for new treatments.
The Foundation for Sarcoidosis Research (FSR) needs funding to advocate on behalf of patients. FSR funds a patient registry to collect data and to guide researchers in developing new treatments and searching for a cure. Without the data, we can’t get the funding required to do the front-end research needed to access NIH grants for advanced studies toward a cure. Thus, no data – no cure.
There are currently only 2500 individual patient profiles in the Sarcoidosis Patient Registry. The goal is 10,000 by the end of this year – and the sooner the better. We can only do this with your help.
The FSR Patient Registry collects data directly from Sarcoidosis patients. The sooner we get to critical mass, the sooner we can get funding (and the sooner we can get better).
If you or someone you know are a patient or are suffering from this disease, here is the link to the FSR site where you can securely fill out a patient profile: https://fsr-sarc.patientcrossroads.org/
My book (Getting Better) and my personal philanthropy (Steps To Getting Better) has given me an opportunity to speak with many people about the impact that Sarcoidosis has on so many peoples’ lives.
Please consider making a donation directly to the cause by going to the FSR web page and being as generous as you can: https://www.stopsarcoidosis.org/how-you-can-help-win-the-fight/donate-now/