Five Reasons to Attend a Neuroendocrine Cancer Patient Conference

Educational opportunities. No matter how experienced you are about handling your disease, everyone can learn. Being treated for a rare cancer can often be isolating, and without exposure to a variety of points of view, we can miss new ideas and trends that can impact our futures. The educational aspect of a conference can expose you to new treatment regimens and therapies and help you discover how to be a more productive advocate for your treatment and care.

Networking with peers. Patient conferences provide a great opportunity to network. Often patients and caregivers from different regions of the country can become valuable resources for referrals and best-practices. Avoiding your peers for whatever reason you have can actually limit you own success in fighting neuroendocrine cancer. You will find that the people who come together at a conference can help each other uncover ideas and spark inspiration when they get to know each other on a personal level.

Encounter the vendors & suppliers who provide the therapies you need. Too often people shy away from exhibitors at conferences. They fear they will have to talk to salespeople, but these industry suppliers are some of the best people for you to get to know if you want to learn more about the current direction of treatment. Discovering innovative products and services for your business is critical to your treatment and care in today’s fast-paced world. Invest time with the sponsors at the event and turn them into your friends and allies.

Position yourself as an expert. It has been suggested that well over half the requests by neuroendocrine cancer patients to their physicians for specific treatments are honored. A neuroendocrine cancer patient conference is the perfect opportunity to build your knowledge and become a better advocate for your health! You will hear directly from experts. Save your life by making sure you know enough to participate in your care so you are getting the best treatment plan possible.

Have fun. Being a neuroendocrine cancer patient or caregiver is hard work and it is stressful. All work and no play can get old fast. Patient conferences can add a layer of enjoyment to managing your disease by mixing a social aspect into your patient journey. Taking an extra day at the beginning or end of the trip to explore or visit friends in the region is also a great way to maximize the investment in travel. Never underestimate the power of a little fun mixed with some interesting people!

The internet won’t replace the conference experience. Many falsely believe that since they can now access industry information via the internet that the days of the live meeting are gone. The truth is, meetings are more important than ever. The value in meetings comes from the human-to-human connections that occur. Often people cite the serendipidous “hallway-conversations” that they have with other attendees as the most valuable parts of attending an event. While these are not on the agenda, or mentioned in the learning objectives, when two or more people begin to discuss topics on a deeper and personal level, the success of the event to those involved becomes irreplaceable. It is the people that bring the ROI to your time at a conference.

NCAN has 4 conferences scheduled for 2017. Why not make it your business to attend at least one of them?

Saturday, March 25th – NET Patient Conference – Charlotte, NC (Registration open NOW!)

Saturday, April 22nd – NET Patient Conference – Lexington, KY (Registration open NOW!)

Saturday, May 6th – NET Patient Conference – Seattle, WA (More information to come!)

Saturday, October 14th – NET Patient Conference – Iowa City, IA (More information to come!)

NCAN’s 2017 Kentucky Neuroendocrine Cancer Patient Conference

Registration is open for the 2017 Kentucky Neuroendocrine Cancer Patient Conference & support group meeting on April 22nd, 2017 in Lexington, KY!

Date & Time: Saturday, April 22nd, 2017 from 8AM-5PM

Where: Griffon Gate Marriott Resort & Spa – 1800 Newtown Pike, Lexington, KY 40511

Price: $20 per person – includes breakfast, lunch, & snacks

Agenda:

8:00 am – 8:30 am     Registration and Breakfast

8:30 am – 8:45 am     Welcome By: Robert Wahmann          

9:00 am – 9:45 am     Controlling Symptoms of Hormone Hypersecretion By: Lowell Anthony, M.D.

 9:45 am – 10:15 am     Improvements in NET Imaging By: Riham El Khouli, M.D.

 10:15 am – 11:00 am     What is PRRT?  Results of the Randomized Phase III Clinical Trial By: Larry Kvols, M.D.

 11:00 am – 11:15 am     Break

 11:15 am – 11:45 am     Clinical Trials in NET  By: Aman Chauhan, M.D.

 11:45 am – 12:30 pm     Questions and Answers

 12:30 pm – 1:30 pm     Lunch

 1:30 pm – 2:30 pm     Patient Experiences

 2:30 pm – 4:00 pm     Support Group Session

For more information and to by YOUR ticket to the 2017 Kentucky Neuroendocrine Cancer Patient Conference on Saturday, April 22nd, click HERE!

Produced by: NCAN Bandaid

Don’t Miss the 2017 Charlotte NET Patient Conference!

NCAN has officially opened up registration for the 2017 Charlotte NET Patient Conference for Saturday, March 25th, 2017!

Agenda:

8 AM – 9 AM     Registration and Breakfast

9 AM – 9:10 AM     Welcome- Tricia Wahmann, NCAN

9:10 – 9:45 AM     Surgery and Related Therapies for NET Liver Metastasis- David Iannitti, MD

9:45 – 10:15 AM     NET Clinical Trials- Reza Nazemzadeh, MD

10:15 – 10:30 AM     Break

10:30 AM – 11:00 AM     Treating NETS: A Gastroenterologist’s Perspective-Matthew Eves, MD

11:00 – 11:30 AM     New Medical Treatment Options for Carcinoid / NET Cancer Patients- Brian Morse, MD

11:30 – 12:30 PM     Question and Answer

12:30 – 1:30 PM     Lunch

1:30 PM – 2:30 PM     The Significance of Patient Advocacy- Maryann Wahmann, Ronda Ayala, Judy Golz

2:30 PM – 2:45 PM     Break

2:45 PM – 3:45 PM     Networking for Patients

Meet the Speakers:

David Iannitti, MD- Surgery

Dr. Iannitti is the Chief of Hepatobiliary and Pancreatic (HBP) Surgery. In addition to clinical research in the area of surgical approaches to treat diseases of the digestive tract, he is engaged in basic research that focuses on the development and characterization of microwave ablation technology for the ablation of tumor masses. Dr. Iannitti also collaborates closely with Dr. McKillop in ongoing projects that address the fundamental pathophysiology of Hepatocellular carcinoma development and progression. Dr. Iannitti also oversees the HBP Fellows program at CMC including the research and clinical components. 

Reza Nazemzadeh MD- Medical Oncology

Dr. Nazemzadeh graduated from the University of Texas Medical School at Houston in 2000. He works in Charlotte, NC and specializes in Hematology/Oncology. Dr. Nazemzadeh is affiliated with Carolinas Medical Center.

Matthew Eves, MD- Gastroenterology

Dr. Matthew Eves is a gastroenterologist in Mobile, Alabama and is affiliated with multiple hospitals in the area, including Huntsville Hospital and Mizell Memorial Hospital. He received his medical degree from University of South Alabama College of Medicine

Brian Morse, MD- Radiology

Dr. Morse is an Assistant Member in the diagnostic Imaging section of Moffitt Cancer Center and holds a co-appointment as an Assistant Professor in the Department of Oncologic Sciences at the University of South Florida.  He received a BA in Microbiology from the University of Texas at Austin and an M.D. from the University of Texas Health Science Center at San Antonio.  He completed his radiology residency at the University of Texas Southwestern Medical Center at Dallas where he served as radiology chief-resident during his final year.  After residency, Dr. Morse completed fellowship training in cross-sectional imaging with an emphasis in body MRI at the Mayo Clinic in Scottsdale, Arizona.  Dr. Morse is a reviewer for several journals and has published multiple articles in peer-reviewed journals.  His clinical expertise includes the use of computed tomography (CT), magnetic resonance imaging (MRI), radiographs and fluoroscopy to diagnose cancer and assess treatment response, particularly of the gastrointestinal and genitourinary organs.  His research interests focus on imaging of neuroendocrine tumors.

Important information about this conference:

Where: Charlotte Marriott SouthPark – 2200 Rexford Road, Charlotte, NC 20211

Cost: $20 includes: breakfast, lunch, and breaks.

Special Rate for the hotel is available when booked BEFORE March 3rd. $129/night. You can book your room here!

Self-Parking is FREE.

To sign up for your spot at the 2017 Charlotte NET Patient Conference on Saturday, March 25th, 2017, please click here!

NET Cancer Day and Other Exciting News

Happy NET Cancer Day, Zebras and Co!

I hope everyone is ready to get out and spread awarenesss of NET Cancer all day.

NCAN has been busily preparing for today:

I’m so happy to announce NCAN’s NEW website launch today! Be sure to take a look right here to check it out!

Also, to celebrate NET Cancer Day, NCAN has released the recordings from the 2016 NATIONAL CONFERENCE from NOLA this past September! Be sure to check these out as they are only FREE through NOVEMBER 30th! Be sure to keep an eye out for new programs from NCAN due out THIS DECEMBER! To take a look at the 2016 NATIONAL NET PATIENT CONFERENCE, please visit HERE!

In celebration for NET Cancer Day and due to the large volume of photos and requests for more time to submit, NCAN will be taking your ZEBRA RIBBON and NET Cancer Day photos through November 13th. Please submit all and any photos of you celebrating today to netcanceraware@aol.com. This video will be released on or about November 15th!

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LET’S PUT AN END TO NET CANCER! GET YOUR ZEBRA ON!

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Favorite Food & Drinks in New Orleans

Happy Friday Zebras! With less than a week out to plan, I’m sure many of you are looking for things to do outside of the hotel and conference. I’ve made a little list of some of my favorites for you!

Starting out, the first absolute must-have is the classic beignets. If you haven’t had a beignet before, it is a delicious fried dough pillow covered in lots and lots of powdered sugar.

beignets

You can find beignets in a lot of locations throughout NOLA but my personal favorite and probably the most well known are from Cafe Du Monde. Cafe Du Monde has a bunch of locations but the classic location is on Decatur Street, where you can run into this crazy location and hopefully grab a table to enjoy your treats and enjoy a Cafe Au Lait while people watching in this buzzing location.

For more information on Cafe Du Monde, you can find their website here!

 

I’ve gone back and forth with drinking coffee but when in NOLA, I have at least a cup a day. My next must-have is coffee from probably what is my favorite coffeehouse ever. PJ’s Coffee has many different flavors for all taste types as well as assorted other drinks and pastries for a quick breakfast or just an afternoon pick-me-up. My personal favorite drinks include the seasonal flavors Southern Wedding Cake, English Toffee, Frozen Hot Chocolate, and even a Mimosa!

pjscoffee

For PJ’s Coffee locations, you can find them here!

 

If you like burgers, you will LOVE Yo Mama’s Bar & Grill! I came across Yo Mama’s on accident. I’m allergic to seafood and many of the places my friend and I had looked at menus for didn’t have many nonseafood options. The last restaurant we went to, we asked the host if he had a recommendation for us where we could just get some burgers and a drink and he gave us directions to Yo Mama’s. Funny enough, if you don’t know what you’re looking for, you’d probably just walk right past it! We did! It’s a small, hole in the wall bar but the food is delicious! I ordered a plain Cheddar Cheese Burger with a baked potato on the side and was blown away! After taking some family back for dinner that night, they had gotten the Peanut Butter Burger, which has peanut butter and bacon on it, I knew I had found a gem of a location.

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To see the full menu and to get more information on Yo Mama’s Bar & Grill, you can visit here!

 

I LOVE martinis so finding a martini bar in NOLA was high on my list of priorities. A personal recommendation sent me straight to The Bombay Club at 830 Conti Street and it didn’t disappoint! They have many specialty drinks and going in a group of 8, we each had something different that we all enjoyed. The atmosphere was great, the live music was good and the company was even better. The delicious martinis were just the cherry on top.

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For the menu and more information and the backstory of The Bombay Club, you can find on their website here!

 

No NOLA trip is complete for me without grabbing a Voodoo from Lafitte’s Blacksmith Shop Bar. Located on the corner of Bourbon and St. Philip, this historic building is considered the oldest structure in the U.S. to house a bar. Voodoos are SO delicious and very very strong. Even a small one of these, I was only able to drink maybe a quarter of it before I had to stop drinking it, in fear of not being able to continue drinking at the rest of our stops. If you grab a Voodoo, I wouldn’t plan on needing to drink anything else!

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For more information on Lafitte’s Blacksmith Shop Bar and its history, click here!

 

Lastly, is Mr. B’s Bistro. I really don’t have enough great things to say about Mr. B’s. The food and service is always amazing! You can find Mr. B’s at 201 Royal Street. If you plan on heading to Mr. B’s Bistro, you will definitely want a reservation!

mrbsbistro

To see Mr. B’s Bistro menu or to make reservations, you can visit their website here!

I hope you guys enjoy my favorite NOLA spots! If you happen to check any of them out, be sure to let me know your thoughts and share your favorites with me!

Also, before you make any plans, remember to check out our conference agenda to not coincide with our unbelievable weekend! If you need the agenda, you can find it here!

*Many photos were taken from Google. Only Yo Mama’s photo is my own.

The Countdown is ON!

The countdown is on as today we are just over ONE WEEK OUT from the 2016 National NET Patient Conference weekend in New Orleans, LA!!

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Unable to attend? Subscribe to NETCancerAwarenessBlog for exclusive sneak peaks and updates about the 2016 National NET Patient Conference! Something tells me there will be some vlogging going on that will have some important information that you WON’T want to miss! =]

NCAN is so excited as we get our last minute details ironed out for you!

Look closely here for some addional details and events that have not yet been published:

Thursday- In addition to the opening session, which includes a patient panel whose panelists are medical professionals AS WELL AS patients you will enjoy a really exciting cooking demo featuring neuroendocrine cancer patient friendly recipes.

Friday- 5 PM – Grab a smoothie and a cookie made with neuroendocrine cancer patients in mind, courtesy of one of the conference sponsors, Novartis.

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6 PM – join us for a light snack and networking while you wait for a private comedy show….

7 PM – ENJOY THE COMEDY OF NATIONALLY ACCLAIMED COMEDIAN AND EMMY AWARD WINNING WRITER STEVE MAZAN. STEVE WILL BE PERFORMING A PRIVATE SHOW JUST FOR ATTENDEES OF THE CONFERENCE. DON’T MISS THIS ONE!

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This event is sponsored by: NCAN Bandaid

Sunday- 8 AM to noon – Group Leaders Meeting. If you are a group leader and have not signed up yet, please call us ASAP at 866-850-9555 or email info@netcancerawareness.org if you would like to attend. You MUST sign up today if you would like to attend.

Here’s a more detailed look:

Thursday

Noon- Registration table open

1 pm – 4 pm- Thursday talks and patient panel

4 pm to 6 pm- Novartis Cooking Demo

6 pm to 9 pm- Welcome reception

 

Friday

7 am- Registration and breakfast

7:45 to noon- Morning general session

9:30 – 9:45 break

noon to 1 pm- lunch

1 pm to 5:15 pm- Afternoon general session

2:45 – 3:00 break

4:30 pm – 6:15 pm- NET-friendly smoothies and cookies provided by Novartis

6:00 pm – 7:00 pm- Pre-show snacks

7:00 pm – 7:45 pm- Comedy show- Laughter is the Best Medicine starring Steve Mazan

 

Saturday

7 am- Breakfast

8 am – noon- Morning general session

9:30 – 9:45 break

noon – 1 pm- lunch

1 pm – 5:30 pm- Afternoon general session

2:45 – 3:00 break

 

Sunday

8 am – noon   Group leaders’ meeting

 

Also, here is the agenda for our General Sessions:

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A few more reminders:

  • Please bring extra layers of clothing! The conference rooms DO get cold, please be prepared!
  • For patients: please bring extra medication, in case of emergency! And take pictures of your medication bottles on your cell phone in case you were to lose them!
  • As always, the conference is a safe space for patients. It is a place for learning about a better quality and quantity of life. Please refrain from self-advertisement and solicitation at our conference. If you are caught soliciting, you will be asked to leave for the remainder of the conference without refund. NCAN and our sponsors thank you for understanding and helping us keep this space focused on what is important.

Keep your out for a post on Friday about some of my MUST SEEs and MUST HAVEs while in NOLA! Be sure to subscribe now to be the first to get it right to your inbox!

At the 2016 National NET Patient Conference, Laughter is the BEST Medicine!

Looking for a few laughs on Friday night at the National NET Patient Conference?

NCAN is so excited to finally announce the Friday night social event sponsored by NCAN for the 2016 National NET Patient Conference taking place in just a few weeks! This is a great time to network and relax, taking a break from all the heavy information that will be introduced over this amazing, jam packed weekend!

Introducing Emmy Award winning writer, speaker, comedian and fellow cancer survior Steve Mazan:

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Come enjoy a hysterically funny show- ‘Laughter is the Best Medicine’- just for attendees of the 2016 National Neuroendocrine Cancer Patient Conference, starring Emmy Award winning writer, speaker, comedian and fellow neuroendocrine cancer survivor Steve Mazan. Steve is known for his Emmy Award winning writing for The Ellen DeGeneres Show and for performing his comedy on The Late Show with David Letterman, BUT he is most well known for his award winning film, ‘Dying to Do Letterman.’ 

Steve will be hanging out with the crowd, signing autographs, and he will have some merchandise to give away! There will also be a raffle where you can win an autographed DVD of one of Steve’s best shows!

On your way to the show, from 5 pm to 6:15 pm, stop for some healthy and delicious smoothies and cookies provided by one of the conferences sponsors. These tasty treats were designed specifically with neuroendocrine cancer patients in mind. Doors to the show will open at 6 pm and light refreshments will be served. At 7, it’s time for the show, sponsored by the Neuroendocrine Cancer Awareness Network! 

It’s all happening right in the same hall as Friday’s General Session so it’s easy to get to. This is a great time to network and relax, taking a break from all the heavy information that will be introduced over this amazing, jam packed weekend!

Want to learn more about Steve? Visit SteveMazan.com or check out DyingtoDoLetterman.com for more information on Steve Mazan, his cancer journey, and to check out Dying to Do Letterman. Also, check out this Ted Talks that Steve Mazan did back in 2011: It’s Never too Late to Live your Dreams.

For more information on the 2016 National NET Patient Conference in New Orleans, LA September 22nd, 2016 to September 24th, 2016, please click here!

NCAN Bandaid

2016 LungNET Conference Video Recordings

Happy Monday, fellow Zebras!

Some of you may have seen that NCAN and The Healing NET Foundation have been slowly releasing the videos from the LungNET Conference in Denver, CO on June 11th. Here is a place where you can get all the links in one spot!

Introduction to the 2016 LungNET Conference:

Visit NCAN’s website here. HNF’s website here, and for more information on Dr. Liu, you can get that here.

Basics of Lung Neuroendocrine:

For more information on Dr. Ramirez, you can see my post introducing him, here.

Pathology for Lung Neuroendocrine

You can find more information on Dr. Ryan here.

Surgery of Lung Neuroendocrine:

You can find more information on Dr. Parker here.

Pulonary Medicine for Lung Neuroendocrine:

To find more information on Dr. Kobitary click here.

Medical Therapy for Lung Neuroendocrine:

For more information on Dr. Öberg click here.

Clinical Trials in All Neuroendocrine:

For more information on Dr. Liu, see above links to Dr. Liu’s introduction as well as The Healing NET Foundation website.

Non-Medical Management of Metastatic Disease:

For more information on Dr. Nutting, click here.

Questions and Answers Part 1

Questions and Answers Part 2

NCAN would like to thank all of their speakers, sponsors, and attendees for another successful event!

Want to experience an NCAN NET Patient Conference yourself? Please keep up with NCAN by adding yourself to their mailing list by going to their website and be sure to “like” NCAN on Facebook! Also, keep your eyes out here, on NET Cancer Awareness Blog for some awesome announcements for 2017 coming soon!!

Upcoming: The 2016 National NET Patient Conference in New Orleans, LA!! If you haven’t already, check out that information here because time to register is running out!!

Speaker Spotlight – National Conference Edition Part 11

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James R. Howe V, MD

uofiowaclinic

Bio:

Director, Division of Surgical Oncology and Endocrine Surgery

Co-Director, Neuroendocrine Cancer Clinic

Professor of Surgery  – Surgical Oncology and Endocrine Surgery

Education:

MD, University of Vermont College of Medicine

Fellowship, Surgical Research Fellow, Washington University

Residency, General Surgery, Barnes Hospital

Fellowship, Clinical, Surgical Oncology, Memorial Sloan-Kettering Center

Licensure and Certifications:

Iowa Medical License, Iowa Board of Medicine

Certified, Advanced Trauma Life Support

Board Certified, General Surgery, American Board of Surgery

Qualifying Examination, American Board of Surgery

Recertification Examination, American Board of Surgery

Research Summary:

I am a Surgical Oncologist and Endocrine Surgeon who specializes in taking care of patients with cancers of the pancreas, liver, GI tract, soft tissue sarcoma, melanoma, thyroid, parathyroid, and adrenal glands; I am co-director of the neuroendocrine cancer clinic, Division Director of Surgical Oncology and Endocrine Surgery, and Professor of Surgery at the University of Iowa. My area of research expertise is in Familial Cancer Syndromes, genetic linkage, gene discovery, and gene expression studies. My postdoctoral training at Washington University under Helen Donis-Keller, Ph.D. and Samuel Wells, M.D., was directed at the identification of the gene for Multiple Endocrine Neoplasia Type 2. As a faculty member, my focus has been the genetics of Juvenile Polyposis, which led to the discovery of the 2 predisposing genes. More recently, I have developed a large clinical practice and research interest in the genetics of neuroendocrine tumors (NETs). Our current research focus is the study of gene expression profiles in pancreatic and small bowel NETs to identify new targets for imaging and treatment, and collection of families to search for predisposing genes.

For more information on Dr. James Howe and the University of Iowa Hospitals and Clinics, please visit their website here. You can also view Dr. Howe’s academic profile, here.

You can read Dr. Howe’s publications by clicking here.

For information on the Neuroendocrine Cancer Program at the University of Iowa Hospitals and Clinics, you can find that here.

To make an appointment, please contact:

University of Iowa Hospitals and Clinics: 200 Hawkins Drive, Iowa City, IA 52242

Phone: (800) 777-8442 or (319) 356-1727

Dr. Howe at the 2016 National NET Patient Conference:

Topic: Hepatic Resection vs Liver Directed Therapy

When: Saturday, September 24th, 2016 at 8:30AM*

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Howe and 19 other experts speak on Neuroendocrine Cancer! 

Registration is $125 per person including

  • Thursday’s Welcome Reception 
  • Breakfast, Lunch, and snacks for both Friday and Saturday
  • And keep your eyes out for some special prizes!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket, click here!!

*Time and Date are subject to change.

To check out some of our other speakers, click here!

Speaker Spotlight – National Conference Edition Part 10

drheidiconnolly

Heidi M. Connolly, M.D.

mayoclinic

Location

  • Minnesota

Departments

  • Cardiovascular Diseases

Education

  • Fellow – Adult Congenital Heart Disease Special Fellowship
    Mayo Graduate School of Medicine, Mayo Clinic College of Medicine
  • Fellow – Cardiovascular Diseases
    Mayo Graduate School of Medicine, Mayo Clinic College of Medicine
  • Resident – Internal Medicine
    Mayo Graduate School of Medicine, Mayo Clinic College of Medicine
  • MD
    Royal College of Surgeons in Ireland
  • Other – Undergraduate
    Hamline University

Certifications

  • Cardiovascular Diseases
  • Internal Medicine

Academic rank

  • Professor of Medicine

Professional Highlights

  • Director, Adult Congenital Heart Disease Clinic
  • Director, Congenital Heart Center

Interests

  • Adult congenital heart disease
  • Carcinoid heart disease
  • Echocardiography
  • Marfan syndrome and other aortic disorders
  • Pregnancy and heart disease

For more information on Dr. Heidi Connolly and the Mayo Clinic in Rochester, MN, please visit their website here and the US News report on her here.

You can read Dr. Connolly’s publications by clicking here.

To make an appointment, please contact:

Mayo Clinic Rochester: 200 1st Street SW, Rochester, MN 55905

Phone: (507) 284-2511 or (507) 538-3270

Dr. Connolly at the 2016 National NET Patient Conference:

Topic: Carcinoid Heart Disease: What you need to know

When: Saturday, September 24th, 2016 at 8:00AM*

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Connolly and 19 other experts speak on Neuroendocrine Cancer! 

Registration is $125 per person including

  • Thursday’s Welcome Reception 
  • Breakfast, Lunch, and snacks for both Friday and Saturday
  • And keep your eyes out for some special prizes!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket, click here!!

*Time and Date are subject to change.

To check out some of our other speakers, click here!