Advocate registration open for ILC focused educational course

Hipline
Hipline Member Posts: 195
edited July 2018 in ILC (Invasive Lobular Carcinoma)

Lobular Breast Cancer (ILC) and the Lobular Breast Cancer Alliance (https://lobularbreastcancer.org) will be featured on the final day of Harvard Medical School's annual comprehensive educational course.

Breast Cancer: New Horizons, Current Controversies

July 12 – 14, 2018

Boston Marriott Long Wharf in Boston, MA

This three-day annual course is organized as an educational opportunity for oncologists, oncology nurses, nurse practitioners and other health care providers interested in the care of women with breast cancer.

Lobular Breast Cancer will be the focus of this course on Saturday July 14th. Patient advocates are invited to register for and attend this course using a special discount rate for advocates only. The lobular specific agenda will include:

Immunotherapy in Breast Cancer

ER+ Breast Cancer with a Special Focus on ILC

Imaging, Pathology and Surgery

Biology and Special Subtypes

The Lobular Breast Cancer Alliance and the Importance of Patient Advocacy in Clinical Research

How to Register for this Course as an Advocate

Patient advocates must register directly through the Breast Cancer: New Horizons, Current Controversies registration page. Advocates can attend the full three-day breast cancer educational course, or the Saturday July 14 ILC sessions only.

Advocates who register can use a discount code (DISCOUNT50) on the payment page of registration for a special patient advocate registration rate of $50. This code is intended for PATIENT ADVOCATES ONLY. When completing the registration form, advocates can select "other" in their profile under medical specialty and profession, and may also write in a hospital affiliation "LBCA" if needed.

Please review the Course Website for comprehensive course description and agenda, online registration and to find information about hotel discounts and course location.

Patient Advocates: PLEASE READ BEFORE REGISTERING

What is a Patient Advocate for ILC?

A patient advocate can be a patient, caregiver, survivor or co-survivor of ILC who is working to advance research and improve patient outcomes for current and future patients. Patient advocacy can take many forms:

  • Research advocates partner with researchers and institutions
  • Educator advocates share information about ILC in their communities, online or within breast cancer organizations to raise awareness and share quality information about ILC
  • Peer mentors partner with qualified peer support services to help other patients one-on-one
  • Fundraisers support outreach and ILC research by raising money to support critical needs
  • Public policy advocates work to change health policy.

LBCA welcomes all established patient advocates as well as those who are interested in becoming new patient advocates for ILC. We will share more information about ILC patient advocacy opportunities in the coming months.

Why attend this Educational Session?

Patient advocates who attend can learn about the science and clinical care of lobular breast cancer. They will meet other patient advocates working to advance research and patient care for ILC from around the country. They will learn about the Lobular Breast Cancer Alliance and how to get involved to advance ILC research and patient outcomes.

How much will it cost to attend?

Patient advocates receive a special discounted registration rate, however because LBCA is a new organization and only recently eligible to fundraise there are no scholarships available to assist with travel to Boston or hotel costs.

We encourage you to use this thread to contact others if you're looking for a roommate or to ask questions that the LBCA will try and answer. For those who can't attend, we are working with course organizers to videotape the Saturday July 14 ILC portion of this event and hope to make the content of the ILC Sessions available online in our Resource Library.

What Patient Advocates can Expect

Please know that this event is NOT an appropriate forum to seek personal medical advice from course faculty or attendees, or receive personal medical consultations. All patient advocates will be expected to REFRAIN FROM ASKING FOR PERSONAL MEDICAL ADVICE ABOUT THEIR DIAGNOSIS OR COURSE OF TREATMENT.

About the Course Content

Advocates should be aware that this course is created for and the content is tailored to physicians and trained health care workers and the curriculum and presentation is not geared for general patient education.

Patient Advocate Gatherings

LBCA plans to facilitate opportunities to gather advocates on Friday night July 13th and Saturday afternoon July 14th. We hope you will be able to join. We will communicate more details to registrants closer to the event.

Questions?

Please contact course organizers directly if you have problems registering on the website, hotel reservation questions or questions about course logistics. CEPrograms@hms.harvard.edu or call (617) 384-8600 Monday–Friday, 9 am–5 pm (ET)

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Comments

  • vlnrph
    vlnrph Member Posts: 1,632
    edited March 2018

    Fabulous opportunity at an unbelievable price! Is it really only $50 for all three days?

    I may have to rethink my summer travel plans. It is amazing to see so many specific ILC sessions on a single program. Thanks for your work in coordinating this effort and keeping us up to date

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited March 2018

    Thanks for the posting. I have signed up and will probably attend some sessions each day.

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  • leighseattle
    leighseattle Member Posts: 14
    edited March 2018

    Terrific! Look forward to gathering all the lobular advocates or a meet and greet so we can get to know each other.

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  • leighseattle
    leighseattle Member Posts: 14
    edited March 2018

    We hope to see you there. Lots of opportunity to advance research and refine treatments for ILC. We are really excited about the opportunities this meeting in Boston can bring. Also, just want to remind folks that Harvard and course organizers generously made this discount available to make it more affordable for PATIENT ADVOCATES. We ask that everyone respect the intent of this gesture and use the discount code with discretion. Thank you!

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  • Hipline
    Hipline Member Posts: 195
    edited April 2018

    Hello,

    We have some updated news from the Boston main organizers:

    Please contact course organizers directly if you have problems registering on the website: CEPrograms@hms.harvard.edu or call (617) 384-8600 Monday–Friday, 9 am–5 pm (ET). Questions about hotel reservations only can go directly to Claudia_Cassano@dfci.harvard.edu.

    We hope to see many of you there! Thanks.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited April 2018

    So great to see this-my surgeon AND my oncologist are both speaking. I am not sure I could call myself a patient advocate although I do walk through this process with individuals when asked. Is there any other way to register for this or is it prohibitively expensive?


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  • Hipline
    Hipline Member Posts: 195
    edited April 2018

    That is so great that both your surgeon and oncologist will be speaking! Advocates wear many hats and you certainly seem to fit the role of one who helps others navigate the waters. The other registrations are for medical doctors and researchers and they receive continuing educational credits - so yes, it's a little expensive.


    I hope you register as an advocate and come for the Saturday presentations. Your ten years of BC experience is valuable to us all!

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  • WesternGirl
    WesternGirl Member Posts: 1
    edited April 2018

    Hi - I have booked a room with two queen beds for the night of July 13th so I can attend the lobular day. It was 374.25 USD with tax so if anyone wants to go halfsies let me know (1 night only) Thanks - Brigitte from British Columbia

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited April 2018

    Looking forward to you reporting back. My hockey puck size lobular kept escaping 4 years mammos because they just said I had dense breast. Not until I got dimple did they even blink a eye. Now it's my young daughter I have to watch with her dense breasts.

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited April 2018

    If you are flying into Logan, you can take the MBTA Silver Line bus for free from just outside your terminal to South Station. Then a cab or a just under a mile walk (mostly flat) to the Marriott Long Wharf. Unfortunately, it is not free going back to Logan.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited May 2018

    Hi

    Have tried to register several times as an advocate-but it keeps charging me $270--- so I may not be there!!! Hopefully some of you can send back the information about this conference!!

    thanks


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  • Hipline
    Hipline Member Posts: 195
    edited May 2018

    I am so sorry to hear this! On the first page of registration you have the option in the pull down menu to choose "Advocate". This should give you a Discount option later in the registration where you enter "DISCOUNT 50".

    I hope you try again and if you continue to have problems you can contact the course organizers directly : CEPrograms@hms.harvard.edu or call (617) 384-8600 Monday–Friday, 9 am–5 pm (ET)

    We hope to see you there. Thank you!


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  • momand2kids
    momand2kids Member Posts: 1,508
    edited May 2018

    Hipline-

    thanks--I had the code wrong--I was able to register!!

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  • Hipline
    Hipline Member Posts: 195
    edited May 2018

    Great news momand2kids!! Look forward to meeting you!

    Hipline aka Lori

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  • Hipline
    Hipline Member Posts: 195
    edited May 2018

    The LBCA (lobularbreastcancer.org) would like to invite all the Advocate attendees who will be at the Boston education course to stick around on Saturday July 14 after the last agenda item for another hour and a half to talk about ILC advocacy.

    That would make the end of the day now 5pm on Saturday July 14. We are trying to get a count of how many advocates will be there. If you will be staying until 5pm Saturday (officially the agenda says adjourn at 3:30pm) please let me know. PM or here. Thank you!

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited June 2018

    I am planning to be there.... I can stay later.


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  • Hipline
    Hipline Member Posts: 195
    edited June 2018

    Thanks momand2kids. We look forward to meeting you!

    Lori

    Lobular Breast Cancer Alliance

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited June 2018

    I will be there and I can stay. Melody Allen

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  • Hipline
    Hipline Member Posts: 195
    edited June 2018

    Thanks Melody, we look forward to seeing you!

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  • Yogalady333
    Yogalady333 Member Posts: 9
    edited June 2018

    Hi--just found out about this conference and am planning on attending and going to the advocate session on late Sat. afternoon.

    Just made a hotel reservation for Wed July 11, Thurs. July 12, and Friday July 13--at the discounted conference rate of $349-

    may stay an additional night Saturday if plane schedule doesn't work with group meeting afterwards.

    Looking for a roommate for three or possibly 4 nights. Someone who's a non-smoker and does not like freezing air conditioning at night!


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  • jackel
    jackel Member Posts: 12
    edited June 2018

    Hi Yoga Lady,

    I'm so glad you found out about the conference! I may also be looking for a roommate. I was only planning to stay 2 nights in the hotel -Thursday and Friday mostly due to finances if that interests you. I did not make reservations yet. I will be attending the entire conference. I am actually coming to Boston on Tuesday for a Rr. appt. on Wednesday and have a free place to stay near Dana Farber for those 2 nights. I leave Sat night. I am on the steering committee of the LBCA and have contacted others on my committee as well, but wanted to get the conversation going with you. I live in CA nonsmoker, hate air-conditioning as well. I do Yoga!

    Lets keep each other posted. I will be making final plans in the next few days.


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  • Yogalady333
    Yogalady333 Member Posts: 9
    edited June 2018

    Hi Jackel,

    I just found out that I can get a late flight out on Saturday--did not want to miss the meeting that goes till 5pm! So I've changed the reservation to the first three nights-Wed, Thurs and Fri.

    That would be great if you can share a room for Thursday and Friday nights as the room rates are rather expensive even at the discounted rate.

    Please keep in touch--I only found out about this conference this morning!

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  • Yogalady333
    Yogalady333 Member Posts: 9
    edited June 2018

    Oh and I just noticed you do yoga too--a bonus!

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  • jackel
    jackel Member Posts: 12
    edited June 2018

    Great!

    Just curious if you found out from the FB page or the LBCA website? I will let you know for sure in the next couple of days. My plan was to take an uber to the hotel Thursday morning (probably a bit later than the conference start) from where I am staying. I wish I could swing all 3 nights but hard to turn down the free place!

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  • Yogalady333
    Yogalady333 Member Posts: 9
    edited June 2018

    I didn't find out from either the FB page or the website--there was an article in today's Chicago Tribune that got me googling the topic and led to discovering the conference.

    I understand the preference for a free place to stay--so let's just keep in touch and we'll see how it works out!

    Susan

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  • Staceybee
    Staceybee Member Posts: 72
    edited June 2018

    I just signed up for the conference. I think I will only be able to attend the ILC day on Saturday as I expect to be starting daily radiation that week. Look forward to meeting all the patient advocates!

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  • jackel
    jackel Member Posts: 12
    edited June 2018

    Hi Yogalady,

    I sent you a pm. Hope you got it. Im interested in sharing the room for all three nights if you are still interested!

    Julia (Jackel)

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  • BettsCubs
    BettsCubs Member Posts: 2
    edited July 2018

    Arriving on the 11th,staying at the Marriott Long Wharf,plan on attending Meet and Greet Friday night and staying for Patient Advocacy session Saturday. My husband and I added a day before and two days post conference for sight-seeing. 

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  • Yogalady333
    Yogalady333 Member Posts: 9
    edited July 2018

    Hi Julia,

    Sorry have been out of town on an unexpected trip--yes, that would be great if you can share the three nights!

    The conference fee is really reasonable but the hotel is just too darn expensive for one person--so let's do it together--

    I have a friend who was going to stay the first night if you didn't, but I think she can stay with her daughter--

    if not do you happen to know of any inexpensive places for her to stay in Boston?

    She is not attending the conference so she is not limited to this hotel.

    I will get back to you--I hope it is okay to share contact info on this site?

    Susan

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  • Yogalady333
    Yogalady333 Member Posts: 9
    edited July 2018

    As things have turned out, I am still searching for a roommate for the ILC Breast Cancer Conference in Boston.

    If anyone else is interested in attending, I have a reservation at the Boston Marriott Long Wharf at the special conference rate for Wednesday, Thursday and Friday nights.

    The conference runs July 12th thru the 14th--Thursday, Friday and Saturday. Saturday will be focused on lobular breast cancer and the two preceding days are on all kinds of breast cancer research.

    Please e-mail me if you are contemplating going and would like to share a room.

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