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2017 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

186 Stories from Volunteers, Donors & Supporters

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!

Client Served

Rating: 5

ICAN has been amazingly responsive with recommendations, referrals and options for second opinions as I have navigated the confusing and complicated medical system related to cancer treatment for my mother. It's clear that many cancer patients and families need resources and counsel to seek the best care and clearly understand the options available. I'm sure that many families and cancer patients have found themselves confounded and, unfortunately, unable to get the answers and resources they need before it's too late. ICAN is a service that should be known and available to all dealing with these issues of health and comfort.

1

Professional with expertise in this field

Rating: 5

I am doing volunteering work with ICAN. It is a great organization and is helping so many cancer patients. They are working around the clock to help as many patients as they can. I love what they are doing and I so much admire what Marcia Horn is doing for the patients. I am a doctor from Egypt. The ALL deserve the best.

Eric107

General Member of the Public

Rating: 5

A friend of mine referred my mother and I to ICAN to look for additional treatments for my mother’s colon cancer. From the very start, Marcia helped to usher us into the world of clinical trials and held our hand as we walked through options with my mother’s oncologist.

The world of cancer is a confusing and disorienting place; trying to understand incomprehensible medical terminology, available clinical trials for specific cancers, doctor and hospital specializations, and even the steps for seeking treatment is overwhelming. ICAN offers an invaluable source of help and guidance that enable patients to both understand their treatment options and find the right care.

I can’t thank Marcia and the ICAN team enough for the work that they do. Although my mom is still battling cancer, their work provides immense value for families and enables us to sleep a little better at night. Thank you for your hard work and excellent service.

1

Volunteer

Rating: 5

ICAN is an outstanding patient/family/caregiver resource organization. Expert access to medical information that is trusted, respected, relied upon - that is what patients can count on. That is what they need. The CEO of ICAN is a dedicated professional through and through, with outstanding credentials that represent the organization at very high levels, which in turn allows for a very creditable resource organization that patients and families can consistently count on as the "go to" resource for all forms of cancer/sarcoma. This organization will always connect patients with experts regarding a particular cancer related question pertaining to a diagnosis or treatment, or radiologiy study involving the treatment process/monitoring of a patient.

Client Served

Rating: 5

As a cancer survivor myself, I have experienced the confusion, fear and isolation first hand that come after diagnosis. An advocate can (literally) make the difference between life and death. Following my mother's diagnosis with colon cancer, my family was blessed to find Marcia Horn at ICAN. From the beginning, she was our educated, compassionate, knowledgable, objective support system. Marcia made herself readily available (via phone and email) at that crucial decision making time. She advised us on the latest medical findings and trends, second opinion resources and best practices for followup after treatment. It's overwhelming to be the patient or the family member and care giver, ICAN fills a vital role. Marcia and ICAN, I cannot thank you enough!!

Volunteer

Rating: 5

I am vikram singh jakhar from new delhi, India. my father is suffering from prostate cancer and Marcia K Horn( President and CEO of ICAN ) guided me in my fathers treatment. I am highly obliged and really appreciate her for helpful guidance.

Client Served

Rating: 5

ICAN was invaluable to my family during my Mother's recent episode of colon cancer. She is 86 years old, with atrial fib and the risks to surgery and possible extreme treatments after was frightening. ICAN and Marcia Horn guided us through the questions to ask the Physician, did investigative work on who was the best provider in OKC and provided a radiologist to view the images and provide a second opinion. In short, they were available to us 24/7 and made a scary situation manageable.
I will recommend and support ICAN anyway possible in the future, this is important work.

Professional with expertise in this field

Rating: 5

Marcia Horn and ICAN have helped so many patients navigate the oncology world by providing resources and time to get the best care in the country. They are able to get access to almost any provider and drug available if that is what it takes to help a patient. ICAN doesn't take No for an answer and provides hope for families that often feel they have no other help or resources by helping them empower themselves through the complicated world of oncology. They need as much funding as possible because it means more patients can stay alive and beat cancer.

Client Served

Rating: 5

We heard of Marcia Horn and ICAN through a cousin, who was working in the medical field, and my husband just took a chance, at the beginning of our journey with bc, and called her cold without any introduction, and even though we have never met her in person, she has been a rock for my husband, as she responds to his every email, with positive information and support. This began in 2013 and he still corresponds with her till this very day. Thank you Marcia and ICAN. from Marilyn in Tennessee.

Behnam R.

Professional with expertise in this field

Rating: 5

ICAN needs more funding to be able to work for more patients!