Rare Perspectives

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, we are honored to welcome PSI’s new CEO, Gwen Cooper. As CEO of PSI, Cooper brings over 20 years of executive nonprofit experience in all facets of healthcare, from leading statewide voluntary health organization fundraising and advocacy platforms to serving as an executive in provider delivery systems. We do hope you enjoy our conversation. Please share with your family, friends and network. We also invite you to write a review. Together, let's reach the world, inspire others, and help make a difference for those within as well as outside the rare disease community. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, we welcome Amy Jackson who serves as a PSI patient access specialist. Listen in as Amy answers some of the most commonly asked questions about insurance coverage. You won't want to miss this important episode. We do hope you enjoy our conversation. Please share with your family, friends and network. We also invite you to write a review. Together, let's reach the world, inspire others, and help make a difference for those within as well as outside the rare disease community. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, we welcome our dear friend Lisa Wright back to the Rare Perspectives podcast to share her story. At the age of 49, Lisa’s lifelong mystery had finally been solved. It was just 10 months earlier that her twin sister was diagnosed with the very same rare disease. And although the discovery has brought closure to so many unanswered questions, it has also led to a thousand more. We hope you enjoy our conversation. Please share with your family, friends and network. We also invite you to write a review. Together, let's reach the world, inspire others, and help make a difference for those within as well as outside the rare disease community. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! This week on Rare Perspectives, we caught up with PSI’s Nathan Thomson, who works with our Government relations and advocacy team. In this episode, you’ll get to learn more about not only who Nathan is and what brought him to PSI, but also about a very critical piece of legislation that we need your help with. You can take action here: https://bit.ly/2BiZppQ We hope you enjoy! Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, our dear friend, Amee Ireland, PSI patient and advocate returns to the podcast to discuss life at home, her diagnosis, and how she saved her son's life, which led to his diagnosis of HAE, as well. Amee is a bright light in this world who shines a light on hope for all to see from within the rare disease community and out. We hope you enjoy! Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, meet Bill Bellnap. At 76, Bill was recently diagnosed with Idiopathic Pulmonary Fibrosis. But Bill is not alone. Surrounded by his wife of 52 years and his loving family, Bill has all he needs to fight this battle. On this episode of Rare Perspectives, we invite you, the listener, into a conversation about life, love, rare disease, patient assistant charities, and so much more. We hope you enjoy our conversation. Please share this with your family, friends, and network. We invite you to write a comment and give us a rating. In doing so, you’ll help us reach more people and together raise our voice. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Instagram: instagram.com/psi4patiuents Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, meet Tony Castaldo. Tony is a co-founder of HAEi and has been President since the organization’s inception. He also serves as the President of the US HAE Association and on the Board of Directors of the National Organization for Rare Diseases. He dedicated much of his life to driving improvement in HAE care and remains highly motivated by the challenge of global HAE advocacy. We hope you enjoy our conversation. Please share this with your family, friends, and network. We invite you to write a comment and give us a rating. In doing so, you’ll help us reach more people and together raise our voice. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Instagram: instagram.com/psi4patiuents Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, we conclude our conversation with Broadway actor Matthew Farcher (Pretty Woman Broadway Production, Beauty and the Beast National Tour) as he shares his rare perspective on living life with rare disease and how his diagnosis story has informed his life and career. During our conversation, Matthew shares with us about how he learned of his rare disease, his acting career, baseball, and the power of family. This is part two of a two part series with Matt. We hope you enjoy our conversation. Please share this with your family, friends, and network. We invite you to write a comment and give us a rating. In doing so, you’ll help us reach more people and together raise our voice. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Instagram: instagram.com/psi4patiuents Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, meet Broadway actor Matthew Farcher (Pretty Woman Broadway Production, Beauty and the Beast National Tour) as he shares his rare perspective on living life with rare disease and how his diagnosis story has informed his life and career. During our conversation, Matthew shares with us about how he learned of his rare disease, his acting career, baseball, and the power of family. This is part one of a two part series with Matt. We hope you enjoy our conversation. Please share this with your family, friends, and network. We invite you to write a comment and give us a rating. In doing so, you’ll help us reach more people and together raise our voice. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Instagram: instagram.com/psi4patiuents Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, we continue our conversation with 32 year old fitness coach Jordan Martin. At the age of 9, Jordan was diagnosed with Hemophilia B. Please share this with your family, friends, and network. We invite you to write a comment and give us a rating. In doing so, you’ll help us reach more people and together raise our voice. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Instagram: instagram.com/psi4patiuents Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, meet 32 year old fitness coach Jordan Martin. At the age of 9, Jordan was diagnosed with Hemophilia B. This is part one of a two part conversation we recently had with Jordan. Please share this with your family, friends, and network. We invite you to write a comment and give us a rating. In doing so, you’ll help us reach more people and together raise our voice. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Instagram: instagram.com/psi4patiuents Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, meet Jamie Koll. In this episode you will be inspired by Jamie as she shares her rare perspective on living life with rare disease as well as that knowledge is power, the importance of connecting with others, finding your support system, and that you’re not in this alone. We hope you enjoy our conversation. Please share this with your family, friends, and network. We invite you to write a comment and give us a rating. In doing so, you’ll help us reach more people and together raise our voice. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Instagram: instagram.com/psi4patiuents Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, meet our dear friend, Stephanie Fierman, PSI patient caregiver, daughter, and advocate. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode of Rare Perspectives, we continue with our series of podcasts to discuss the false perceptions of non-profit patient assistance charities. Today, we catch up with PSI General Manager, Mike Herbert. Mike brings to us a unique perspective as to how non-profit patient assistance charities operate. Having been with PSI for 15 years, Mike shares how his first role in answering phones and talking with rare disease patients every single day has informed his various roles over the years. We also discuss some of these myths that are out there in regards to non-profit patient assistance charities. We hope you enjoy this episode of Rare Perspectives. We invite you to share our podcast with your friends, family, and network. We invite you to also write a review and tell us what you think. We would love to hear from you. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode, meet our dear friend, Amee Ireland, PSI patient and advocate. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode of Rare Perspectives, we continue with our series of podcasts to discuss the false perceptions of non-profit patient assistance charities. We recently caught up by phone with PSI’s Director of Operations, Tiara Green. Tiara offers a unique perspective to our conversation as she and her team speak with patients every single day. They understand first-hand just how crucial patient assistance charities are. We hope you enjoy this episode of Rare Perspectives. We invite you to share our podcast with your friends, family, and network. We invite you to also write a review and tell us what you think. We would love to hear from you. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode of Rare Perspectives, we continue with our series of podcasts to discuss the false perceptions of non-profit patient assistance charities. We recently caught up by phone with PSI’s Director of Government Relations, Jim Romano. Jim has been with Patient Services Incorporated for 15 years and offers us some unique insight into this discussion as it relates to our continued efforts on capitol hill. We hope you enjoy this episode of Rare Perspectives. We invite you to share our podcast with your friends, family, and network. We invite you to also write a review and tell us what you think. We would love to hear from you. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! On this episode of Rare Perspectives, we are launching a series of podcasts to discuss the false perceptions of non-profit patient assistance charities. And, to best set up this series, I want to read to you from a recent op-ed that was penned by Patient Services Incorporated’s CEO, Art Wood. In this Op-Ed, Art begins with, “As American families continue to struggle to afford their health care, Congress has rightly begun to consider a broad range of policy proposals to help ease the financial burden on patients. From attempts to regulate drug prices to payer business practices to hospital billing, members of Congress from both sides of the aisle have offered a myriad of potential solutions to the rising cost of care. However, as Congress grapples with rising health costs, policymakers should ensure that they do not do anything to jeopardize non-profit patient assistance, a critical lifeline that helps thousands of patients afford their care. Non-profit charitable assistance programs provide temporary support for patients and their families by helping them afford their health insurance premiums, out-of-pocket costs, or other costs associated with care, such as travel, nursing or infusion costs. As health insurance premiums and patient cost-sharing burdens have increased, the cost of simply maintaining health insurance coverage has become prohibitive for many Americans. This is particularly true for those living with a rare disease or managing a chronic condition, including HIV/AIDS, cancer, diabetes, hemophilia, pulmonary hypertension, arthritis, and others. While most uninsured patients qualify for manufacturer free-product programs, non-profit patient assistance programs were designed to help the underinsured afford their premiums or copays and prevent them from becoming uninsured.” So, why are non-profit patient assistance charities being scrutinized? On this mini-series of Rare Perspectives episodes, we’ll talk to leading advocates in this discussion in order to help set the record straight as we go beyond the hashtag “Let Charities Be Charitable” and to the heart of the issue. On this episode, we speak with the CEO of Patient Services Incorporated, Art Wood, about the state of patient assistance charities, some of the myths being projected, and the impact PSI is making within the rare disease community. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! Meet Lisa Wright. At the age of 49, Lisa’s lifelong mystery had finally been solved. It was just 10 months earlier that her twin sister was diagnosed with the very same rare disease. And although the discovery has brought closure to so many unanswered questions, it has also led to a thousand more. This is his story. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! Meet Chris Draft. Chris Draft is the Founder, President, and CEO of the Chris Draft Family Foundation (CDFF) whose mission has been to empower families to lead healthy lifestyles. He is also the Co-Founder of Team Draft, leading the creation of a national campaign that is changing the face of lung cancer. He is an internationally recognized speaker, community leader, and family and character advocate who serves as an NFL Ambassador and a national spokesperson on many health-related issues, including the care and treatment of asthma, from which he suffers, and lung cancer, the disease that claimed the life of his wife, Keasha in 2011. Learn more at teamdraft.org Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! Meet Joel Kirby. As a teenager, Joel was diagnosed with Crohn's disease. This is his story. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! Meet Lyle Romans. Lyle was diagnosed with Idiopathic Pulmonary Fibrosis at 20-years-old. This is his story. Stay Connected with PSI! Facebook: www.facebook.com/PSI4Patients/ Twitter: twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org

Since 1989, Patient Services Incorporated has restored hope and health to rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis, and explore the heart of the experience! Meet Anne Bruns and her son, Ethan. Ethan was diagnosed in January of 2013 with Atypical HUS, a disease of the complement system that causes blood clots to form throughout major organs and primarily affects the kidneys. Ethan was rushed to the ER with what they thought was a severe stomach virus. It turns out that he was in complete kidney failure upon arrival. It would take two and half weeks for doctors to diagnose Ethan. This is their story. Stay Connected with PSI! Facebook: https://www.facebook.com/PSI4Patients/ Twitter: https://twitter.com/PSI4Patients LinkedIn: linkedin.com/company/patient-services-inc Are you or someone you know living with a chronic illness and in need of financial assistance? Visit www.patientservicesinc.org