Patients are the Future of Rare Disease

SAN DIEGO, California - This past week marked the Rare Patient Advocacy Summit, #2019GGSummit, in which over 1,000 participants gathered to learn, teach, and collaborate within medicine to spotlight rare, ultra-rare, and complicated diseases around the world. This unique group of patient-focused advocates spent several full days, meeting with other patients/families, learning from professionals, to learn new ways to help create much-needed support for improving research, science, technology, and medicine within vulnerable populations. For the first time in the seven years of the summit, iCAN was awarded a scholarship to attend and gather information on ways that the pediatric community could further help to support the Global Genes mission. iCAN Director, Amy Ohmer, met with grassroot patient organizations, pharmaceutical giants, and community partners to better understand the often, difficult, environment for rare disease patients.

iCAN Director, Amy Ohmer, At the 2019 Global Genes Rare Patient Advocacy Summit

As Ohmer explained, "There is no time to waste. Patients living with rare, complicated, and chronic conditions need help now. Through iCAN, we can support the voice of the patient by providing a platform to share stories." The theme of story-telling was particulary highlighted during the summit as many patients spoke of being an n=1, or at most, a handful of similarly diagnosed patients, living with a particular rare disease or condition. One parent shared that she did not want the summit to end as when it did, it meant having to once again "be part of a bigger group that simply does not understand what my child goes through". Through the Rare Patient Advocacy Summit, families were given tools to better have a roadmap leading to collaboration, and additional research. As Ohmer learned, the first step is knowing how to tell your own diagnosis story, then through harnessing the power of social media, to finally, engage a collaborative network. "Through our robust community network, our brand-new iCAN website, and the support of our youth members, we can make a difference", Ohmer explained. "We are always ready to roll-up our sleeves and do as much as we can to help our kids and their parents. Kids are our future and the time to help is NOW!" To learn more about Global Genes, visit www.globalgenes.org. To learn more about supporting the iCAN mission of helping youth around the world, visit www.icanresearch.org. The iCAN Summit for 2020 will be held in Lyon, France and the application for speakers and sponsoring partners may be found on the iCAN website as well. #iCANMakeADifference #2020iCANSummit #iCAN #GlobalGenes #PatientAdvocacy #PediatricVoices

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