The SDHB Pheo-Para Coalition is a volunteer organization whose mission it is to first educate Healthcare professionals and patients on the SDHB genetic germline mutation as well as its role and impact in this orphan disease. Pheochromocytomas and Paragangliomas are neuroendocrine tumors, and those patients who present with an SDHB genetic germline mutation are unfortunately associated with much higher rates of malignancy. Furthermore, there are no cures for this disease and the treatments are nonexistent and inadequate. Today, we lack effective chemotherapeutic and radiation therapies that can give these patients hope and help them survive this orphan disease. Therefore, the second part of our mission will be to focus on supporting research which will ultimately lead to an effective treatment of the SDHB form of the disease. To accomplish this objective, we will conduct fundraisers as well as attempt to gain access to other potential investors, so that we can provide educational and research grants from the proceeds in an effort to advance science in this important and underserved area. We will also partner with other organizations and academia to try and learn more about the disease and what treatment options might exist that could be effective.
Finally, we have created a website which we hope will be a resource to patients and Healthcare professionals alike where they can access information on the symptoms of the disease, the diagnosis, and importantly the location of medical centers and doctors that can provide assistance today…