About the Episode
Listen in as 4G Clinical's Elana Rose shares her own story living with an invisible illness on this podcast episode. Not just to inspire those currently diagnosed with brain tumors but also to help spread awareness on rare diseases across the globe and bring greater hope to patients around the world.
Tune in to this episode of Trial Trends™, a podcast brought to you by 4G Clinical and hosted by Kathleen Greenough, VP of Commercial Operations at 4G. Our aim here is to tackle big ideas, challenge the status quo, and bring fresh perspectives to a rapidly changing world of clinical trials. Disrupt the old ways of thinking and discover the newest trial trends with us!
In today’s episode, guest Elana Rose sheds light on her personal experience with rare diseases and how this has changed her perspective in life. While there may be as many as 300 million people living with rare diseases around the world, many of them feel lonely. What is it like to face a trial with no real treatment? Listen in as Elana gives her background with CIDP and a brain tumor, her reaction to receiving the diagnosis, and what it’s like to have no direct treatment.
Elana shares advice for others who find themselves in this same tough position. She encourages listeners that if they know there is something wrong, stick with it and get a diagnosis. While not many people understand what those suffering from rare diseases are going through on a day-today living basis, Elana shares what great impact support groups and organizations can bring by way of significant encouragement and therapy. She argues that the organizations raising funds for research are equally as important as those bringing encouragement to the afflicted. Learn about the “Brain Box”, a process of understanding what a disease is, how to deal with it, and the support network surrounding.
People can often feel lonely because they do not look like they are sick or suffering. With a lack of sympathy due to an issue that cannot be seen physically, Elana has learned much about the patient experience and that affects her work interactions. Being a person that fights and refuses to take “no” for an answer, Elana has gained a different perspective on her diagnosis and working to find treatments. Learn what it is like being involved in research, where it is now, and looking back to what it has been. Listen in to hear about the shocking statistics Elana shares, and the need for more active involvement in these spaces.
As the episode draws to a close, Kathleen asks what advice Elana has for manufacturers and pharmaceutical companies—listen to her call for greater research. Don’t miss out on the key message of raising awareness: select a charity from any country—and get involved!
Libbi Rickenbacher, Director of Strategy, has over 15 years of experience in the field of life sciences, and is an e-clinical RTSM solutions subject matter expert.
Her experience lies at building and managing accounts, clients, and strategic initiatives. Has a proven record of success in conceptualizing and delivering client focused solutions, standards, and providing oversight and guidance to both internal and external teams. Holds BA in both Neuroscience and Psychology and a Doctorate (PhD) in Neuroscience.
Senior Director, Business Development
Elana Rose, Senior Director of Business Development has 10 years of experience in life sciences spanning across Quality Assurance, Contracting and Business Development in Medical Devices, CROs and eClinical vendors specializing in IRT.
Working with clients across EMEA and APAC, Elana thrives on understanding and delivering to client needs, working collaboratively with internal and external teams to bring together quality solutions and services. Diagnosed with CIDP, a rare neurological disease, Elana is passionate about bringing awareness and support to those affected by rare disease. She studied at Bath Spa University with Hons in English and Biology.