Finding Support
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Several organizations provide support and resources for individuals affected by neuroendocrine tumors (NETs) globally and within the United States. Here are some organizations, along with their contact information and websites:
Global Organizations
INCA is a global network of NET patient advocacy and support organizations, aiming to raise awareness and provide resources for those affected by NETs.
Email: info@incalliance.org
Website: https://incalliance.org/
NETRF is the largest global funder of NET research, dedicated to discovering cures and more effective treatments for neuroendocrine cancers.
Email: info@netrf.org
Website: https://netrf.org/
NANETS is a professional society of medical professionals committed to the support of the medical community in treating NET patients and furthering NET science and education in North America.
Email: staff@nanets.net
Website: https://nanets.net/
NCAN provides support for NET patients and caregivers, offering educational resources and organizing conferences to raise awareness about neuroendocrine cancers.
Email: info@netcancerawareness.org
Website: https://netcancerawareness.org/
Several European organizations provide support and resources for individuals affected by neuroendocrine tumors (NETs). Here are some key organizations, along with their contact information and websites:
European Organizations
The Kidney Cancer Association was founded in 1990 by Eugene P. Schonfeld and a small group of patients and doctors in Chicago, Illinois and has grown into an international non-profit organization. The KCA promotes scientific advances through two annual research symposiums and a robust grant program, participates in legislative advocacy, and seeks to be a source of education and resources for patients, caregivers, and anyone impacted by kidney cancer.
Website: https://www.kidneycancer.org/
Email: office@kidneycancer.org
Lung Cancer Europe (LuCE) is the voice of people living with lung cancer and their families with lung cancer at European level. LuCE provides a European platform for lung cancer patient advocacy associations and networks and supports the establishment of national lung cancer patient groups in those European countries where such groups do not yet exist.
EURORDIS (European Organization for Rare Diseases) is a non-governmental patient-driven alliance of organizations and individuals dedicated to improving the quality of life of people living with rare diseases in Europe.
Email: eurordis@eurordis.org
Founded in 2004, ENETS is dedicated to improving the diagnosis and treatment of NETs. It has over 1,500 members from various medical disciplines, including oncology, endocrinology, gastroenterology, nuclear medicine, pathology, radiology, surgery, and basic/translational science.
Email: info@enets.org
Website: https://www.enets.org/
Neuroendocrine Cancer UK is a UK-wide charity providing support and information to those affected by neuroendocrine cancer. They offer a helpline and various resources to assist patients and caregivers.
Email: info@neuroendocrinecancer.org.uk
Website: https://www.neuroendocrinecancer.org.uk/
A German network offering support and information for patients with neuroendocrine tumors.
Email: info@netzwerk-net.de
Website: https://www.netzwerk-net.de/
A French association dedicated to supporting patients with various endocrine tumors, including NETs.
Email: contact@apted.fr
Website: https://www.apted.fr/
These organizations offer resources, support networks, and educational materials for individuals affected by neuroendocrine tumors in Europe. Connecting with them can provide assistance and community support throughout the journey with NETs.