2843 E. Grand River Avenue – #230 East Lansing, MI 48823 [email protected] 303-783-0924

Positive Patient Perspectives

Remote Site Second Opinion Information Listing

Getting a second opinion-   tips from the American Cancer Society https://www.cancer.org/latest-news/getting-a-second-opinion.htmlhttps://www.cancer.org/content/dam/CRC/PDF/Public/8438.00.pdf
When do you need a second opinion and why –  WebMD:https://www.webmd.com/cancer/dx-next-steps-16/cancer-when-do-you-need-a-second-opinion-and-why

Integrative Oncology Essentials https://integrativeoncology-essentials.com/2015/08/should-you-get-a-second-opinion-in-your-cancer-care/
MAYO CLINIC’S ADVICE ON GETTING A SECOND OPINION
https://connect.mayoclinic.org/champions/advice-on-second-opinions/

Getting a second opinion- tips from the American Cancer Societyhttps://www.cancer.org/latest-news/getting-a-second-opinion.htmlhttps://www.cancer.org/content/dam/CRC/PDF/Public/8438.00.pdf
When do you need a second opinion and why –  WebMD:https://www.webmd.com/cancer/dx-next-steps-16/cancer-when-do-you-need-a-second-opinion-and-why

Integrative Oncology Essentials https://integrativeoncology-essentials.com/2015/08/should-you-get-a-second-opinion-in-your-cancer-care/


MAYO CLINIC’S ADVICE ON GETTING A SECOND OPINION
https://connect.mayoclinic.org/champions/advice-on-second-opinions/


N L M S F  LISTING OF ONLINE SECOND OPINIONS:
CITY OF HOPE CANCER CENTERS https://www.cityofhope.org/breakthroughs/the-power-of-the-remote-second-opinion


CLEVELAND CLINIChttps://my.clevelandclinic.org/online-services/myconsult

COLUMBIA CANCER CENTERhttps://www.nyp.org/secondopinion

DANA FARBER CANCER INSTITUTEhttps://stanfordhealthcare.org/second-opinion/overview.html

JEFFERSON UNIVERSITY HOSPITALS ( Sidney Kimmel Cancer Center)https://hospitals.jefferson.edu/diseases-and-conditions/hepatitis-c/remote-medical-second-opinion.html

JOHNS HOPKINS – Sidney Kimmel Cancer Center http://brand.hopkinsmedicine.org/assets/pdfs/best/takeones/Medical_Second_Opinion.pdf

MASSACHUSETTES GENERAL HOSPITAL https://www.massgeneral.org/second-opinions/?source=post_page————————–


MEMORIAL SLOAN KETTERING CANCER CENTERInternatiional Patient Remote Online Second Opinion Service https://www.mskcc.org/experience/become-patient/international-patients/requesting-medical-records-review-mail

STANFORD HEALTH CARE https://stanfordhealthcare.org/second-opinion/overview.html

UNIVERSITY OF CHICAGO COMPREHENSIVE CANCER CENTER https://www.uchicagomedicine.org/cancer/patient-care/second-opinion

UNIVERSITY OF COLORADO HEALTH SCIENCES – Anschutz Cancer Pavillion https://www.uchealth.org/services/cancer-care/remote-second-opinions/


UNIVERSITY OF MICHIGAN –  ROGEL CANCER CENTER https://www.rogelcancercenter.org/health-providers/remote-second-opinion

PATIENT-CAREGIVER ADVOCACY NETWORK

THE SARC RESEARCH ADVOCACY COUNCIL-” “Representing Patients/Families/Caregivers”

THE SARC RESEARCH ADVOCACY COUNCIL

The NLMSF is a member of the  SARC Research Advocacy Council tobring the voice of LMS patient community  to the table through to:

*  Developing recommendations and providing input based on experience and understanding of treatment protocols.

*  Developing recommendations to enhance programs and activities that may currently be experiencing barriers to implementation.

*  Disseminating to patients available trial information and distribute research findings once trials are completed.

NLMSF RESEARCH ROUNDTABLE-“SCIENTIFIC RESEARCH THINK TANK”

NLMSF NCI MyPART Announcement-“FOR PATIENT PARTICIPATION”

 

                                                            

THE NATIONAL LEIOMYOSARCOMA FOUNDATION ( NLMSF)  JOINS THE  NCI  MyPART  NETWORK
The NLMSF has joined the National Cancer Institute (NCI) My Pediatric and Adult Rare Tumor (MyPART) Network as an advocacy partner to represent the LMS Community.
The MyPART Network is coordinated through the NCI Center for Cancer Research (CCR).
The NLMSF has joined the National Cancer Institute (NCI) My Pediatric and Adult Rare Tumor (MyPART) Network as an advocacy partner to represent the LMS Community. The MyPART Network is coordinated through the NCI Center for Cancer Research (CCR).
This program brings patients and their families together with healthcare providers, advocacy organizations, and researchers to work together to find treatments for rare cancers affecting children, adolescents, and young adults.
The National Leiomyosarcoma Foundation is going to be instrumental in helping the NCI MyPART Network in providing information and connecting patients to the Natural History Study for Rare Solid Tumors. This study will follow patients of all ages with rare solid tumors, including LMS, over the course of their disease to learn how these tumors develop and to discover treatments.
The NLMSF-SPAEN International LMS Research Roundtable will be communicating/coordinating with the  MyPART Network Initiative for mutually beneficial information sharing.  Such a collaboration will facilitate information gathering for better understanding of the LMS tumor biology and molecular makeup,  and facilitate MyPART collaboration with the NLMSF – SPAEN International LMS Research Roundtable precision studies and LMS treatment objectives.
The National Leiomyosarcoma Foundation will facilitate the exchange of information between LMS patients, healthcare providers, researchers, and the MyPART Network. This program is very important and has the potential to impact LMS tumor study and study design by the research community.   Such collective / collaborative efforts can only help in future studies to accelerate and advance new treatment options.
Patients are invited to participate in the MyPART Network Natural History Study of Rare Solid Tumors by visiting:  www.cancer.gov/MyPART to learn more.
For Patients:   Contact MyPart to participate in the program:https://www.cancer.gov/pediatric-adult-rare-tumor/about/contact
For any questions regarding participation or for more information about MyPART for the LMS Community, please contact: Annie Achee at [email protected] or 303 808-3437

                                                                           

LMS News Tracker 5/14

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Rare Artist Reception Photos

The Rare Artist Reception, a most important event of  the 2017 Rare Disease Week in Washington, D.C. showcased Rare Disease artists from 2015 and 2016 entries. The artists of these beautiful artworks are patients – of all ages, in the US and Canada.  Very heartwarming messages are provided along with each art piece, making it so meaningful by the symbolic expression of the rendered artwork.

12-year-old artist from Toronto Canada honoring her service dog Tory

This self-portrait symbolizes the power of the mind to conquer a disease /disability challenge of a rare disease.

 “Ten Redefined” is a depiction of the sudden, intense pain of a debilitating disease that challenges one’s state of mind and body.

“Zebras Matter,” a revelation of the body and mind . . . what is within.

 “Comfortable in my Shell”   – from a patient who has three different rare diseases
“Waterlilies” to raise awareness about a rare disease which affected the artist and her mother.

 “Girl With a Pearl Earring.”  recreated by the artist who was inspired by a renowned artist with the same titled painting.