#240 Young Adult Patient Advocacy with Sneha Dave

Joining us for this episode is Sneha Dave, Founder and Executive Director of Generation Patient, an organization that facilitates events, online programs, and advocacy initiatives for young adults living with chronic and rare conditions to ensure that they have the opportunities and resources to thrive.   Sneha Dave (she/her) graduated from Indiana University in May 2020 where she majored in chronic illness advocacy as well as journalism. She created the Generation Patient and its program the Crohn’s and Colitis Young Adults Network (CCYAN) to create support systems for adolescents and young adults with chronic conditions across the U.S. and internationally. She is proud to work with a team composed entirely of young adults with chronic medical disabilities and to keep Generation Patient transparent and independent from the pharmaceutical and insurance industry.   Sneha has completed an undergraduate research fellowship in health policy at Harvard T.H. Chan School of Public Health. She has also interned at numerous places such as Pfizer Global Headquarters in health economics and outcomes research for Inflammation and Immunology. Sneha has spoken on Capitol Hill, featured nationally on C-SPAN, and is a past contributor for U.S. News and World Report. She has served on the Democratic National Committee Disability Policy Subcommittee and she is part of the Midwest Comparative Effectiveness Public Advisory Council, an independent appraisal committee of the Institute for Clinical and Economic Review. Sneha also serves on the patient engagement collaborative for the FDA. She was previously a national policy fellow at RespectAbility and now serves as the youngest director on the board for the national nonprofit. Sneha has won multiple awards for her advocacy work, so we are pleased to have her featured here on DNA Today!    Shoutout to our Communications Lead, Corinne Merlino, for recommending Sneha Dave to be our guest.  On This Episode We Discuss: Sneha’s personal experience with ulcerative colitis and how it led to becoming a patient advocate The mission and goals of Generation Patient and the Crohn's and Colitis Young Adults Network Some of the biggest challenges facing young adults living with chronic and rare conditions today The importance of increased representation of young adults in clinical trials and the impact it can have on the development of treatments Potential harms of DTC pharma advertising on Instagram and TikTok to young viewers and what can be done to mitigate that harm How the Generation Patient team ensures that the organization remains independent from the pharmaceutical and insurance industry How Sneha and her team at Generation Patient engages with the FDA Advice for young adults living with chronic or rare conditions who may feel isolated or unsupported in their experiences Advice for other young professionals that are seeking ways to be more involved and gain experiences in healthcare   You can learn more about Generation Patient and their different initiatives at the links below: Generation Patient's website Community and resources for college students with chronic conditions Registration for Generation Patient's 2023 Virtual Health Advocacy Summit The Crohn’s and Colitis Young Adults Network   Be sure to follow Generation Patient on Twitter, Facebook, and Instagram and our guest, Sneha Dave, on Twitter!   Stay tuned for the next new episode of DNA Today on Friday, June 16th, 2023 where our host Kira Dineen sits down with a household name and an icon in the world of talk shows. New episodes are released every Friday. In the meantime, you can binge over 240 other episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Today”. Episodes since 2021 are also recorded with video which you can watch on our YouTube channel.     DNA Today is hosted and produced by Kira Dineen. Our social media lead is Corinne Merlino. Our video lead is Amanda Andreoli. Our Outreach Intern is Sanya Tinaikar. Our Social Media Intern is Kajal Patel. And our Graphic Designer Ashlyn Enokian.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to [email protected].    TrakGene has designed a genetics electronic health record. Here’s what it features: pedigrees, demographic data, genetics information, risk tools, and sophisticated reporting, all within a clinician designed workflow. It integrates within other clinical genetic software, databases, and hospital information systems to maintain accurate patient records. You can learn more in episodes 208, 210, and 237 of DNA Today! Use Promo code “DNATODAY” to get $800 off your subscription, that’s a discount of 80% exclusively to DNAToday listeners. Go check it out at trakgene.com. (Sponsored)