Webinar on Self-Advocacy and Care Coordination

National Organization for Rare Disorders(NORD) is offering a free webinar on Wednesday, July 24, 2:00pm to 3:00pm Eastern Daylight Time.

Do you want to learn how to better advocate for yourself in a healthcare setting? Are you curious how care coordination fits into a successful treatment plan?

Many NETs patients could benefit from this knowlege.

The webinar will cover these topics and more in a free webinar on July 24 at 2:00pm EDT.

Join NORD as Laran Hyder, Director of Education and Outreach at the Neuroendocrine Tumor Research Foundation (NETRF), explains self-advocacy and how you can develop skills to become a more effective self-advocate.   Then, NORD’s own Jill Pollander, Director of Patient Services, will discuss care coordination, using advocacy skills to coordinate care, and how care coordination can influence outcomes for patients.  

Register here.    

May we all have the best possible outcomes,
Cy  

We Added a Videos Page

Many people find it easier to watch video presentation than to read all of the technical things on the internet about neuroendocrine tumor and try to winnow out the fluff and nonsense.

We have added a video page always available from the main menu above, with youtube video playlists from a number of trusted sources. Our intent is to keep this up to date, so that the information is now and not stale.

We will certainly post the videos from the NETRF 2019 Patient and Caregiver Conference on August 10, 2019   as soon as they are available.

May we all have the best possible outcomes.

Donate Tumor Tissue for Research

This from our friend and member Annie Farrell:

A subject to let our fellow NET travelers know about.  I haven’t had tissue taken in a long time.  Don’t think the biopsy two years ago of the golf ball sized tumor near my thyroid counts since they probably just biopsied it, saw it was NET and threw away the remains.

 

Donate Tumor Tissue to Help Research

Consenting to donate excess tumor tissue, from a biopsy or surgical procedure, helps advance our knowledge of NETs by providing researchers with an essential resource. See our FAQs about tumor tissue donation. (MORE)

 

Patients can donate tumor tissue through Pattern.org.  Pattern.org links to an electronic consent form where patients can learn more about contributing. Should a patient decide to provide consent, Pattern.org arranges for excess tumor tissue to be shipped from a patient’s institution to the NETRF cell line research laboratory.

Make sure to talk to your doctor several weeks in advance of your procedure about your plan to donate excess tumor tissue.

If you donate a portion of your tumor tissue to the NETRF Cell Line Project, you can also choose to donate tissue to the institution where you undergo your procedure.

Thanks Annie for valuable information in the fight against NETS!

2019 NETRF Denver NET Patient and Caregiver Education Conference

This is exciting news for those of us in Denver or who can travel to Denver.

The NET Research Foundation is pleased to invite you to join the 2019 Denver NET Patient and Caregiver Education Conference on Saturday, August 10, 2019, at the Sheraton Denver Tech Center. This full-day conference will include experts from the Rocky Mountain region. Our agenda includes speakers like Dr. Eric Liu, Dr. Lauren Fishbein, Dr. Heloisa Soares, and Dr. Mark Lewis.

The conference is free!

Breakfast, lunch, and snacks will be provided at the conference, seating is limited. A block of hotel rooms at a discounted price is available for out-of-town attendees.

6-13-19 Denver Conf Graphic1.png

This the information flyer: 6-13-19 Denver Conference Flyer1
This will take the place of our next quarterly meeting. I am registering today, I hope many of you register soon as well.

Information Sources

We have added a new page to this blog which lists a large number of information sources for NETs! See the menu above. It now has NETs Information Sources as a link.

One of the worst problems with our disease is the difficulty of finding accurate, appropriate, reliable information about the disease and our own manifestations of the disease. Dr. Google can be very misleading sometimes. Our specialists want to help but usually can only answer the questions we ask and we don’t know what questions to ask.

The best approach we have found is that each patient must be their own best advocate (or have a loved one who can do it.) To be a good advocate one must be as well informed as possible.

Please help us. If you find inaccurate information, let us know. If you find a new trusted source, let us know.

May we all have the best possible outcomes…