Allies Links

We have collected some of the most useful links around the web for information on pheochromocytoma and paraganglioma.  If you would like to talk to us about adding your link, send us an email to

  • Pheo Para Alliance

    The Alliance is a non-profit organization with a focus on finding a cure for Pheo Para through education, research, and fundraising.


    PRESSOR is an international consortium of doctors and scientists devoted to finding new treatments and diagnostic tools by sharing Pheo Para research findings.

  • Pheochromocytoma Organization

    This site includes a message board where patients can communicate with each other.

  • NORD

    National Organization of Rare Diseases is a non-profit organization dedicated to helping those with rare diseases through education, research, and service.


    Association for Multiple Endocrine Neoplasia Disorders is a support group for families affected by MEN disorders.

  • VHL Alliance

    This site provides information about von Hippel-Lindau and support group information.

  • Endocrine Society

    This group of physicians, researchers, and scientists is dedicated to furthering endocrine research and providing information to patients and physicians.

  • Global Genes Project

    The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world.

  • Carcinoid Cancer Foundation

    The CCF has the most comprehensive and up-to-date repository of information about carcinoid and neuroendocrine tumors.

  • Kasshoku Saiboshu wo Kangaeru-kai

    This site (in Japanese only) is the home of a pheo and para support group in Japan. Their goals are to support one another, learn, and
    exchange information.

  • NADF

    This group provides guidance and information about what life is like with adrenal insufficiency. Extensive resource for Addison’s disease.

  • CNETS Canada

    The Carcinoid-NeuroEndocrine Tumour Society-Canada was formed in 2007 to assist the Canadian community, primarily patients, with this type of disease.


    A Spanish organization founded in 2013 with the goal to improve diagnosis, treatment, and quality of life in pheo/para patients and other subsets of related rare tumors.

  • INCA

    The International Neuroendocrine Cancer Alliance is the global voice in support of neuroendocrine cancer patients.

  • Unicorn Foundation

    The Unicorn Foundation is the only Australian not-for-profit medical charity focused on neuroendocrine tumors (NET). 

  • ReImagine

    A company that improves the lives of everyone affected by disease using evidence-based classes that teach skills to start feeling better immediately.

  • Paradifference

    A foundation that aims to financially support research in the field of pheo and para, with special regard to malignant paragangliomas caused by the SDHB mutation.

  • NVPG

    The Netherlands Paraganglioma Association that provides information on paragangliomas (glomus tumors) and pheochromocytoma. It represents the interests of their members and is supported by doctors from various teaching hospitals.


    Empowering and supporting patients and their families with knowledge, a sense of community and advocacy as well as supporting initiatives in data collection, treatment, patient care and cooperation between medical centers in Europe.

  • SUNY Upstate Cancer Center

    World-class care provided in a world-class environment with unique services for cancer patients.