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2018 Top-Rated Nonprofit

ICAN, International Cancer Advocacy Network

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Nonprofit Overview

Causes: Cancer, Health, Philanthropy, Private Independent Foundations, Technology

Mission: ICAN provides Personalized Medicine Cancer Case Management Programs, through its customized patient advocacy services, to Stage IV patients who urgently need new therapeutic options to consider. The organization specializes in complex and rare diagnoses, whether pediatric or adult cancers. ICAN, given years of experience with oncology issues and the anticancer drug pipeline, assists patients in the battle to extend life with high quality of life through physician referrals, cutting-edge information and advocacy services, clinical trials research, pre-approval access or "compassionate use" analysis, molecular profiling services, and palliative care program services. ICAN has been profiled in Newsweek based on the still enduring complete remission of one of its breast cancer patients and in Pharmaceutical Executive Magazine (where ICAN was viewed as the exemplar of cancer patient advocacy--out of 5000 organizations to choose from). ICAN has also been featured in the Robert A. Nagourney, M.D.'s pivotal book "Outliving Cancer" and is featured in the biography of anticancer drug discoverer G. Robert Pettit, PhD.

Results: ICAN is leading the international multi-stakeholder coalition, the Exon 20 Group, which consists of the world's leading thoracic oncologists and physician-scientists as well as patients, caregivers, pharmaceutical and biotech companies, academic medical center and commercial lab molecular pathologists, and exon 20-focused scientists. The Exon 20 Group represents patients from 17 countries. We are following each patient in the Group, insertion sequence by insertion sequence, and providing Molecular Tumor Board services (as we do for ICAN solid tumor patients with complex cases) at no charge to patients who are progressing on exon 20-specific agents. Because we are following patients so closely in not only exon 20 trials but other trials for our other solid tumor/blood cancer patients, we are able to provide study teams with important insights. We are also able to advise the biopharma community about protocol amendments and improved trial design in what all stakeholders understand to be a dynamic and challenging area. As a general matter regarding the "metrics" discussion, when one is dealing with individual cancer patients and their specific cases, the metrics are extending time to progression and disease-free survival in addition to patient-reported outcomes on management of side effects and quality of life issues. The metrics question becomes "compared to what?" since no cancer patient is like any other cancer patient. The one metric that counts at ICAN is an overwhelming number of our patients, given the countless accolades we have received over the past 22 years, testify to ICAN's pivotal assistance in making a critical difference in life prolongation and quality of life issues. On the metric of "Was there a stone left unturned in the patient's journey with cancer?", our ICAN patients and their families resoundingly answer "No" year after year.

Target demographics: Metastatic cancer patients, especially those with rare cancers or unusual presentations of commonly-diagnosed tumors or blood cancers

Direct beneficiaries per year: More than 600 patients and caregivers, including more than 60 patients from 17 countries dealing with a rare lung cancer mutation. Our legislative and policy work has helped patient-physician communications and assisted clarity in the biologics and biosimilars area as well as improved patient access and patient-physician-pharmacist communications for hundreds of thousands of patients across the United States. We also advise fellow patient advocates on advocate-health regulatory approval issues abroad.

Geographic areas served: All states in the U.S. as well as 54 countries

Programs: Personalized Cancer Care Navigation Programs Remission Coach Advocacy Programs Health Care Information Technology Initiatives Legislative Advocacy Programs Linda Jenckes Health Care Policy Program Clinical Trials Enrollment and Retention Tracking Program Exon 20 Group--for all solid tumors diagnosed with exon 20 insertions Named Programs (named by grateful patients or their families), please see http://www.askican.org/namedpat.html

Community Stories

196 Stories from Volunteers, Donors & Supporters

Professional with expertise in this field

Rating: 5

For patients and families seeking in-depth and detailed information on advanced (Stage 4) cancer, in all its forms, Marcia Horn, President of ICAN (International Cancer Advocacy Network) is truly an indispensable resource. Marcia and her colleagues at ICAN work on a 24/7 basis to acquire and deliver the most pertinent, intelligent and useful information, guiding patients toward the most promising treatment protocols, whether they are FDA-approved or accessible only through clinical trials.

All questions, from scientifically basic to medically sophisticated, are welcomed and thoroughly answered at a level of complexity that precisely matches the patient or family member. Having collaborated closely with Marcia, I can attest to the fact that the quality of ICAN’s services and information is up-to-the-minute fresh, relevant and actionable. In short, for information and advocacy on advanced cancer, Marcia Horn is at the top of my list.

I am enjoying being involved in the EXON 20 GROUP, co-founded by Kevin Hanlon and Robert Hanlon.

Carey Gold, The Health Advisory.com

1

Client Served

Rating: 5

I felt so alone and confused with assisting my father in his battle with cancer. After a few months of navigating the complicated world of our medical system, I was put in touch through a family friend with ICAN. A month ago my family was faced with the difficult challenge of choosing the best option given to us by our oncologist, including different clinical trials and standard of care. With all options there were pros and cons. The anxiety I felt making such a difficult decision was eased by the support of ICAN. The team at ICAN was more than responsive. They provided us with resources, guidance, were able to shed light on certain treatments that were effective or ineffective based on my father's genetic makeup. This is something that our oncologist should be able to guide us through, but the issue is oncologists are limited to the resources of their institution. Therefore, we were limited to the information we received. We sought a 2nd opinion and they also had different options. When we asked them which option they felt were better including the other institutions', we were met with opposition. Not surprisingly, they were unable to provide any opinions on the other institutions' progress or therapies. Cancer is a complex disease and there is no one method or approach. The ICAN team made me feel like I had an extended family for support and guidance. All cancer patients and their families should seek support from an organization like ICAN. Marcia Horn is an incredible person. She is not only knowledgeable and dedicated, she also has the kindest heart. I am so thankful to have ICAN help me during this time. The network of professionals and volunteers is deep and ever growing. I thank all those participating as a volunteer through ICAN. My family is grateful for your selfless acts of service to cancer patients and community.

Volunteer

Rating: 5

Working with the ICAN and the Golf Tournament Board was very rewarding. The Liberty Mutual Invitational, benefiting ICAN was a wonderful event raising awareness and much needed funds for ICAN.

1

Professional with expertise in this field

Rating: 5

I have volunteered at several organizations but ICAN is the best organization I have volunteered at. They are so very helpful and supportive. Marcia Horn is the best supportive person I have ever met -online-. I do recommend ICAN for the cancer patients and also Med students.

Professional with expertise in this field

Rating: 5

I had the privilege to work at ICAN as a research volunteer to search for the cutting edge research related to all types of cancer. I had a great opportunity to get to know Marcia Horn as I wanted to do more volunteering work at ICAN. She and Regina was so supportive to help me out and to choose what I can do. I very much believe in ICAN and its amazing leadership. I am not enough thanking ICAN for all the great help to the cancer patients. I am giving them the best possible review, because simply they deserve it.

Professional with expertise in this field

Rating: 5

ICAN is a wonderful organization in helping so many cancer patients with referral to the best oncologist across the US. ICAN has a lot of volunteers who searches the databases to find the most recent updates on the drugs or the clinical trials. Marcia Horn, the CEO and President is the best person I have ever known who help and support me as a volunteer in this amazing organization. I strongly support ICAN and Marcia Horn and give them the best of the best 5-stars review.

Professional with expertise in this field

Rating: 5

Participation in Liberty Mutual Invitational is the best!!!! Great organization that serves the under and unserved as well as all in need. Needs more funding to support more patients!!!

Volunteer

Rating: 5

ICAN mounts first class events specifically the Liberty Mutual Invitational and working on golf events is productive, fun, and collegial.

Client Served

Rating: 5

I received a call back immediately, offering a compassionate response when we needed it most!

1

Volunteer

Rating: 5

This is such a great organization - so helpful and passionate to help those in need of Cancer treatments!!

Previous Stories

Volunteer

Rating: 5

ICAN is a great organization that prides itself on taking absolute care of every cancer patient who needs the information and help with treatment of this disease. Not only are they so caring and amazing, they truly seem to take interest in every person and it shows.

Client Served

Rating: 5

ICAN helped me access treatments and specialists that otherwise would not have been available to me

Client Served

Rating: 5

I really believe so wouldn't be here today without ICAN..their advice and moral support helped give me the courage to fight. I'' eternally grateful.

Professional with expertise in this field

Rating: 5

ICAN is an incredible organization because of the extensive and great work they are doing for the cancer patients. My experience with ICAN is a life changing experience. It's wonderful to see how they are very helpful and supportive to the patients and also the research volunteers. I have no words to express my gratitude to ICAN and Marcia Horn.

1 Ahmed E.

Professional with expertise in this field

Rating: 5

I love ICAN. My friend referred me to ICAN to be a volunteer to gain new experience and to help the cancer patients. I am enjoying my experience with ICAN. I have worked on several projects with them and it's very good to work with different team leaders to gain different experiences.

Professional with expertise in this field

Rating: 5

ICAN is a great organization and I love what they are doing with helping the patients. I am very supportive to ICAN. I am a volunteer at ICAN and they are very helpful and supportive to their volunteers.

Professional with expertise in this field

Rating: 5

I have been volunteering at ICAN for almost a year and I really enjoying my experience with ICAN. They have a fantastic board who are working really hard to help the cancer patients. I very much support ICAN.

Client Served

Rating: 5

ICAN is amazing they have been so incredibly helpful for my mother. She is currently battling cervical cancer that has metastasized. ICAN put us in contact with the best doctors which are giving her the best treatment imaginable. Without them this awful disease probably would of taken my mother from me. Truly grateful for ICAN I can't say enough great things about them. They are making a huge difference for my mother and a incredible impact on the cancer society. I couldn't be more happy every time I talk to them they make me feel important like talking to family.

Professional with expertise in this field

Rating: 5

I work with ICAN as a volunteer. Its of great experience , lots of help to many patients. Recommended as highly professional organization.

1 Abdelghany

Professional with expertise in this field

Rating: 5

I am studying medicine in Egypt and also I had a great opportunity to be a volunteer at ICAN. So I would like to say it is a wonderful experience and I'm most grateful and thankful to ICAN amazing team and Marcia Horn, the CEO and President. I'm still enjoying my volunteering time with ICAN. ICAN is one of the most greatest non-profit organizations I have ever seen in helping the cancer patients. ICAN has an amazing board who are working 24/7. I am and will be always be supportive to ICAN.

1 Ahmed3

Volunteer

Rating: 5

I am volunteering with ICAN for more than 3 years. Very friendly and professional environment with enthusiastic and great people. As a soon to be doctor, my time is tight in medical school and I better invest in it the most rewarding way, I volunteered with many governmental and non- governmental organizations, almost everywhere, online, in Sudan, Saudi Arabia... but nothing could be of more value than the reward of promoting the noble cause of helping cancer patients. I enjoyed my time with ICAN, doing what I like to do and learning new skills and improving what I already have. Great experience. Also, the CEO, the team leaders and members, as well as the admin team, all of them are down to earth, helpful and very kind. I'm leaving 5 stars on my review, I recommend ICAN highly without preservation!