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By Susanna Ray<\/em><\/p>\n It took doctors several years to figure out what was wrong with Karman Kahambwe.<\/strong> And no wonder: the Congolese-American teenager living in Eastern Washington had a rare cancer typically seen in elderly Italian men.<\/p>\n Once Kahambwe was diagnosed with Kaposi sarcoma<\/span><\/a> and treatment began, he faced another challenge almost as difficult.<\/p>\n \u201cAlienation is the word that comes to mind,\u201d says Kahambwe, now 20 years old and working for a realtors association in West Richland, Washington. \u201cEven amongst a group of children at school that all had some sort of medical issue, when we\u2019d all be in the nurse\u2019s office with a flare-up, I was still an outcast. With a rare sickness that you don\u2019t understand, that peers don\u2019t understand, that doctors and parents and family don\u2019t understand, it just makes you feel even more alienated and alone.\u201d<\/p>\n That isolation is one of the things Dr. Taran Gujral<\/a><\/span> aims to resolve for patients and scientists alike with his new Transformative Rare Cancer (TRACER<\/a><\/span>) initiative at Fred Hutch Cancer Center in Seattle \u2014 an independent organization that also serves as the cancer program for UW Medicine, a NORD Rare Disease Center of Excellence<\/span><\/a>. Gujral is counting on the power of the pack to draw attention to, and funding for, rare cancers. His initiative is gathering siloed researchers from around the country and providing a forum to share support and expertise. It also offers seed funding to help smaller labs develop models and generate data and an AI-powered drug matching platform to repurpose medications that are approved for more common cancers and have potential for treating others.<\/p>\n \u201cWe need to come together and address these challenges that only the rare cancer community faces,\u201d Gujral says. \u201cTRACER brings us all together under one umbrella, and now we\u2019re part of a team, with more resources to address these needs.\u201d<\/p>\n The National Cancer Institute defines a rare cancer<\/span><\/a> as one that affects fewer than 40,000 people a year in the U.S.<\/strong> In fact, out of about 200 different types of known cancers, only about a dozen are considered common<\/span><\/a>. And specific types of rare cancer might only be diagnosed in a few people each year.<\/p>\n But as a group, rare cancers make up more than a quarter of all cancer diagnoses, the institute estimated in 2019. So with cases expected to top 2 million<\/span><\/a> in 2024, rare cancers could collectively affect more than 500,000 Americans this year.<\/p>\n That leaves a great deal of cancers \u201cvastly understudied,\u201d Gujral says. And that makes it hard for patients, who often don\u2019t know the unusual signs in time to seek help; for doctors, who can struggle to find the right diagnosis and treatment; and for scientists, who may not have enough data to attract research grants that tend to be awarded where they can have the biggest impact.<\/p>\n \u201cWe\u2019re doing a good job of decreasing death rates among patients with common cancers, but some with rare cancers are neglected, and overall it\u2019s a huge population,\u201d Gujral says. \u201cIf we work together as a team, instead of in silos, we can work to understand these cancers \u2014 what are the key driving factors, genes, mutations \u2014 and then explore possible solutions and ways to target them that may already exist in the academic and industry spaces.\u201d<\/p>\n Gujral studied life sciences and math at Queen\u2019s University in Ontario as he began a career with the Canadian military, following in the footsteps of his father and grandfather. The first lab he worked in as an undergraduate student was researching rare forms of thyroid cancer. One day it dawned on him that his military job of analyzing radio signaling data from various networks in Asia was surprisingly similar to his lab work, where he analyzed cells to understand why they reacted in certain ways and predict what they might do next.<\/p>\n A professor convinced him to switch tracks, and now Gujral has been studying rare cancers for more than two decades. As a PhD student, he could focus exclusively on research. But once he began running his own lab at Fred Hutch, he realized how difficult it is to get funding to study the unusual diseases that held his attention.<\/p>\n The collaborative nature of the Seattle cancer community showed him the benefits of joining forces, as he worked with local surgeons to get fresh samples of rare tumors to study.<\/p>\n \u201cI realized that if I\u2019d had more support earlier, my work could have been done in a much more accelerated way,\u201d Gujral says, \u201cso why not come together and help others facing the same challenges?\u201d<\/p>\n The cause is starting to get more attention.<\/strong> The U.S. government established the Rare Cancers Research Program in 2020 and has been steadily increasing support, earmarking $17.5 million for the effort this year.\u00a0 Starting last year, Congress designated Sept. 30 as Rare Cancer Day<\/a><\/span>. And the U.S. Food and Drug Administration (FDA) awarded Gujral a five-year, $2.5 million grant to help develop<\/span><\/a> his drug-matching platform for ultra-rare cancers.<\/p>\n \u201cThe momentum behind rare cancers is becoming incredibly strong, which is what we\u2019ve needed,\u201d says John Hopper, co-founder and co-chair of the Rare Cancer Coalition<\/span><\/a> at the National Organization for Rare Disorders, and a member of TRACER\u2019s advisory board. \u201cTRACER is a great example of where this is all going and the promise it holds. It\u2019s a huge step no one else has taken yet.\u201d<\/p>\n Awareness is the catalyst for change and progress, says Christine O\u2019Connell, whose daughter, Jane, was diagnosed with stage IV kidney cancer in 2017, when she was 3 years old. It was a fast-growing cancer that had spread to Jane\u2019s lymph nodes, lungs and spine by the time it was discovered. While her treatment was considered successful, the 11-year-old is now at risk of secondary cancers and heart damage.<\/p>\n O\u2019Connell had always thought research for children\u2019s diseases was well funded \u2014 \u201cThose angelic faces with bald heads that you see in the ads, how could you not want to help them?\u201d she says \u2014 so she was shocked to discover that the lion\u2019s share of money goes to common cancers in adults instead.<\/p>\n Since all pediatric cancers are considered rare because of the low numbers of diagnoses, \u201cthere just aren\u2019t enough sick kids for pharmaceutical companies to recoup the investment in chemotherapy or drugs specifically for children,\u201d she says. \u201cThat was a huge eye opener.\u201d<\/p>\n O\u2019Connell began fundraising five years ago and has raised a million dollars for research into immunotherapy for childhood cancers.<\/p>\n The community that has sustained O\u2019Connell and her family was created by \u201cluck and happenstance\u201d through a Facebook group and serendipitous meetings, she says. So TRACER\u2019s mission to intentionally foster alliances and networking opportunities \u201cis definitely fulfilling a need,\u201d she says.<\/p>\n With rare cancers, \u201cthere\u2019s not enough money to be redundant,\u201d O\u2019Connell says, making collaboration the key. \u201cIf there\u2019s a breakthrough and they\u2019re telling somebody about it, and if there\u2019s a risk and they\u2019re sharing it right away, as a fundraiser that\u2019s something I applaud.\u201d<\/p>\n Gujral is organizing his second TRACER forum this year \u2014 \u201clike a breast cancer symposium,\u201d he says, \u201cexcept it\u2019s about all different types of rare cancers\u201d \u2014 to give scientists and researchers facing similar challenges a platform to interact and to learn from and support each other. They also present their work to each other at the events and learn from experts in the industry and the FDA, to address the challenges of clinical trials with small patient populations, for example.<\/p>\n After the first symposium in March, two labs that had participated went on to write grants together, Gujral says, even though they work on different rare cancers. He hopes researchers and oncologists will continue joining forces to help each other solve problems, perhaps by sharing expertise, such as if one lab excels at genetic screening and another at drug screening.<\/p>\n Through TRACER, Fred Hutch is also providing resources to some small labs that have samples of rare cancers but not enough funding to develop a model to generate data and a solid hypothesis that can be tested.<\/p>\n And TRACER\u2019s drug matching platform promises to shave decades off the time it takes to provide treatment to patients with rare cancers. It combines genomic testing of rare tumor biopsies and screening against more than 200 drugs that have already gone through safety trials and are approved for treatment of common cancers, to identify medications that have the potential to be repurposed.<\/p>\n \u201cNo single institution will invest a billion dollars to develop a drug for a very small population, but there are other possibilities that can be explored,\u201d Gujral says. \u201cWhen you develop a new drug, you\u2019ll be helping patients 10 or 15 years down the line. But we\u2019re hoping to help patients who currently face this disease, because there could be an approved drug sitting there that could help with this.\u201d<\/p>\n To this day, Kahambwe says, he doesn\u2019t know anyone else who\u2019s had Kaposi sarcoma.<\/strong> In one sense, he wishes all cancers were that rare. But he also longs for a sense of community.<\/p>\n \u201cIf people knew what was going on with these rare cancers and rare illnesses, they\u2019d be just as dedicated to researching and eradicating them as they are with the commonly known ones,\u201d Kahambwe says. \u201cI strongly believe that with where people\u2019s hearts and minds are in today\u2019s day and age, with just a little bit of information, research would be bountiful in cases that are rare.\u201d<\/p>\n That\u2019s the point, Hopper says \u2014 to educate, build awareness and activate more groups to provide funding for research, \u201cso we can get correct diagnoses and treatments and better outcomes.\u201d<\/p>\n Learn more about Fred Hutch Cancer Center here.<\/em><\/a><\/p>\n Learn more about the TRACER Transformative Rare Cancer Initiative here.<\/em><\/a><\/p>\n Learn more about the NORD Rare Cancer Coalition here.<\/em><\/a><\/p>\n![\"Dr.](\"https:\/\/rarediseases.org\/wp-content\/uploads\/2024\/09\/taran-gujral-2-300x183.jpg\")
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