Connect with some of the advocacy and research organizations dedicated to helping people know more and take action.
The Pheo Para Alliance’s mission is to empower and support pheochromocytoma and paraganglioma patients globally through knowledge, education, advocacy, and camaraderie while sponsoring key initiatives in data collection, treatment, collaboration, and patient wellness. They recently merged with the Pheo Para Troopers.
Global Genes’ mission is to connect, empower and inspire the rare disease community.
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. The second part of the mission will be to focus on supporting research which will ultimately lead to an effective treatment of the SDHB form of the disease.
The Pheo Para Project’s mission is to increase awareness of pheochromocytoma and paraganglioma, and to support patients with these rare tumors, as well as their families and caregivers. On this site, you’ll find stories from patients and their families, documenting their paths to diagnosis and their lives as they move forward with the disease.
The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
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