..but our fight isn’t over.
It may be the end of Sarcoidosis Awareness Month, but unfortunately patients and their loved ones will continue to face this devastating disease every single day of the year. Thank you to all who joined us in raising awareness this month by wearing purple, sharing their story and kicking in to show their support.
You can still join us in the fight. FSR has promising projects on the horizon, and we need your help to achieve them.
The SARC Patient Registry is a study collecting longitudinal data from sarcoidosis patients that will provide scientists who are studying the disease with patient-provided information. This coded and de-identified information is crucial for discovering things like why some patients will spontaneously go into remission without any treatment, which demographics are affected and if there are genetic or environmental links, or what kinds of treatments can be most effective for sarcoidosis patients, depending on factors organ involvement and stage of illness.
Funding Promising Research Projects like the FSR Clinical Studies Network (CSN) and the Sarcoidosis Disease Model. The CSN is a consortium of eight clinical research sites across the world, conducting FSR- and industry-funded studies and comparing outcomes. The Sarcoidosis Disease Model is a new project FSR will begin funding this Spring. The grant application process began in Fall of 2016 and we’re excited by the promise shown by the selected projects. Finding a disease model for sarcoidosis will change the face of research to discover new treatments for this disease, as well as better understand the disease pathology.
Expand Our Patient and Physician Resources online with our new website. These resources include our physician directory, our online support group on Inspire, our treatment protocol, Patient Ambassador Program and countless others. All of these came to be with input and support from patients like you. Help us spread awareness by sharing these resources with your fellow patients and your physicians. Join Team KISS to take action and join us in the fight to Stop Sarcoidosis, whether it’s through hosting an independent fundraiser for FSR, finding an event near you, starting a support group in your area, connecting with other patients online, or choosing to donate– there’s a way to get involved for everyone.