The NETwork

28/03/2025

Show your support for the PPA!
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Phearless necklaces are BACK IN STOCK! We also have a new product, "Showing My Stripes" stickers!

Click on the following link to visit our shop: https://pheopara.bigcartel.com/.
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28/03/2025

Join us this May for the Joint Congress of ESPE and ESE, which will bring together paediatric and adult endocrine specialists from across the world.

This 'whole life' approach is reflected in the unique scientific programme, which includes Prof. Martin Reincke of Ludwig-Maximilians-Universität München on 'Crosstalk between pituitary and adrenal gland over lifetime in Cushing's syndrome 100 years after Minni G'.

Join us either in-person or online via our @ HOME streamed offering.

Check out the scientific programme and register here 👉 https://espe-ese-congress2025.org

28/03/2025

IMPORTANT NEWS

To Patients, Caregivers and the entire NET Community:

The Carcinoid Cancer Foundation (“CCF”) is evaluating our future functions and mission by stepping back after 57 years to self-assess how we can be most impactful to the community. CCF was founded in 1995 as successor to the Carcinoid Tumor and Serotonin Research Foundation, founded in 1968. In 2009, CCF pivoted away from research and focused on education for patients and their caregivers, developing a hub of checklists, websites and information. We connect with and provide this information to patients and caregivers in the neuroendocrine tumor community through pushing this information to individuals, social media accounts, websites and other contacts (“NET Community”).

Evaluating our future course will take time, effort and honest self-reflection. Fortunately, we have some thoughtful minds on our Board as well as others in the NET Community to provide important insight and guidance to help us with respect to this future direction. We have delegated the management of certain of our services to another trusted non-profit, the Neuroendocrine Cancer Foundation (“NCF”). READ MORE at www.carcinoid.org

25/03/2025

In 2022, experts came together to change the name of diabetes insipidus (DI) to arginine vasopressin deficiency (AVP-D), to help clinicians recognise and treat the condition better. This was because the condition was frequently confused with type 1 and type 2 diabetes. even though the condition is not linked to blood sugar levels.

This condition is rare but can be treated effectively when recognised and responded to correctly. The name was changed to remove any possible confusion with type 1 and 2 diabetes and to ensure that patients with AVP-D receive appropriate treatment for their condition.

In 2009, Kane Gorny, a young man with AVP deficiency from South London, tragically died after medical staff failed to recognise his condition. Kane did not receive the life-saving medication he needed as a result of this.

To mark , City News spoke to Rita Cronin, Kane's mother, to share her story and spread awareness of this condition and it's recent name change. You can watch this video by scanning the QR code or using this link - https://shorturl.at/UGO06

By sharing Kane's story, we hope to raise awareness of this condition and the importance of using and sharing the new name. Please share this post with others to help spread this important information and ensure that the new name is widely adopted.

Thank you to all involved in creating this video 🧡

25/03/2025

The popular DNA test kit company 23andMe announced Sunday that it has filed for bankruptcy and is looking for a buyer. And while the company has promised to continue protecting customer data amidst a possible sale, Wirecutter’s tech experts think you should delete your data now. https://nyti.ms/4c3EZOD

06/03/2025

Live Luncheon with the experts, with Dr Raj.

Join us this Thursday, March 6th, at 12PM ET, for the next episode of "Luncheon with the Experts!" Our featured guest will be NET expert, Nitya Raj, MD!Dr. N...

05/03/2025

👉 ( ) and ( ) are rare slow-growing neuroendocrine tumors arising from adrenal medulla and sympathetic or parasympathetic paraganglia respectively.
👉Up to 40% of pheos and paras are the result of an inherited genetic mutation. Genetic testing, which includes a blood or saliva test and speaking with a genetic professional, is recommended for all patients diagnosed with pheo or para.
👉If a genetic mutation is found then other members of the family are recommended to have genetic testing because each of his or her children will have a 50% chance of inheriting the mutation.
📌We support healthcare professionals to be able to make an early correct diagnosis with factsheets on genetic and sporadic pheo and para – available in the following 11 languages: Arabic, Chinese, English, French, German, Hindi, Italian, Japanese, Portuguese, Russian and Spanish: https://incalliance.org/net-info-packs/

05/03/2025

https://youtu.be/zOWuwjamCwg?si=IbAWfqa9YvAxAphh

20/02/2025

16/02/2025

Remember when posting - no weird inks - just blue or black pen, no lipstick, no perfume, plain paper, plain envelope ✌🏼

23/01/2025

The .gov means it's official.Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you're on a federal government site.