In this episode, WCG’s President of Patient Advocacy, Steve Smith, interviews Dr. Jeffrey Cooper, MD, MMM, Vice President of Process & Strategic Improvement at WCG, expert in the conduct of clinical trials, and Parkinson’s patient himself. During their conversation, Steve and Dr. Cooper highlight the strides clinical research has made for many therapeutic areas and the promise research has for individuals across the globe. With a specific focus on Parkinson’s disease, Dr. Cooper dives into his journey as a clinical trial participant and shares his experience on finding a trial, getting enrolled into the study, and his time spent throughout the trial.

In this episode, Steve Smith, WCG President of Patient Advocacy sits down with Julia Jenkins of the EveryLife Foundation to discuss the impact her organization has on giving patients a voice to legislators on Capitol Hill. Julia shares how patient communities can advocate for public policy changes, improve the FDA-regulatory approval process, and educate on the effectiveness of different trial designs for rare disease drug development. Through their conversation, Steve and Julia underscore the importance of collaboration between all clinical trial stakeholders to improve the study process.

In this episode, WCG’s President of Patient Advocacy, Steve Smith, sits down with Sarah Zentack, a Certified Genetic Counselor at InformedDNA and Leslie Urdaneta, Family Support Coordinator at the National MPS Society. Their discussion highlights the importance of genetic counseling and the intelligence patients can gain to better understand their treatment options, ensure they’re receiving the correct information and interpretation of results, and feel empowered to make the right choices for their care options.

In this episode, Karmen Trzupek, MS, CGC, Director of Ocular & Rare Disease Genetic Services and Clinical Trial Services at InformedDNA sits down with WCG’s President of Patient Advocacy, Steve Smith. During their conversation, Karmen and Steve talk about the criticality of incorporating genetic counselors into the medical management of a patient’s genetic diagnosis. 

In this episode, Sarah Tompkins, Patient Advocate of Ehlers-Danlos Syndrome, chats with WCG’s President of Patient Advocacy, Steve Smith. During their discussion, Sarah shares with us her experience being a patient with a genetic rare disease who is involved in a clinical trial.

In this episode, Mark Opler, PhD, MPH, Chief Research Officer at WCG MedAvante-ProPhase sits down with Steve Smith, WCG’s President of Patient Advocacy to discuss the achievements in the field of CNS and rare disease clinical research. Dr. Opler and Steve highlight the unmet need of therapies available for rare disease, the importance of patient enrollment, ensuring efficacy and safety throughout a trial, and how time is of the essence in every study that is conducted. 

In this episode, Amanda Moore, CEO of Angelman Syndrome Foundation speaks with Steve Smith, WCG’s President of Patient Advocacy. As a mom whose son has been diagnosed with Angelman Syndrome - a rare neuro-genetic disorder that affects 1 in 15,000 children - Amanda walks through the time from receiving initial diagnosis to the odyssey of her son’s patient journey in therapy and clinical trials.

In this episode, Kristin Smedley sits down with President of WCG Patient Advocacy, Steve Smith, to talk about the journey her two children with retinal blindness have experienced. Known as the “happiest mom of two blind kids” and a powerful TEDx talker, Kristin highlights the CRB1 rare genetic degenerative disease both of her boys are affected with. She underscores the importance of genetic diagnosis and shares the impact clinical trials and patient advocacy groups have had in finding a cure for this disease.

In this episode, WCG’s President of Patient Advocacy, Steve Smith, talks with Emil Kakkis, MD, PhD, Chief Executive Officer of Ultragenyx Pharmaceuticals and President of the non-profit EveryLife Foundation for Rare Diseases organization. Known for his work in developing an enzyme replacement therapy for the rare disorder MPS I and his connection to the Ryan Foundation, Dr. Kakkis shares with us his experiences in being involved in bringing drugs to market and forming relationships with patients along the way. 

In this episode, Mark Dant, Founder of the Ryan Foundation speaks with Steve Smith, WCG’s President of Patient Advocacy. Their conversation highlights the importance of Patient Advocacy Groups – and the resources they bring to individuals diagnosed with a disease – as well as the great promise clinical trials bring to patients. Mark shares a personal story of his son, Ryan, who was diagnosed with MPS I, and how Patient Advocacy Groups and clinical trials have positively impacted their lives.