Patient Community Driven Alliances

In this inspiring episode, host Roger Legtenberg welcomes Kirsty Cullen, Chief Executive of the Optimum Health Clinic in London, UK, who is passionate about raising awareness about complex fatigue-related illness and the integrative approach developed to optimize care. What to Expect in This Episode: - The daily struggles of living with complex fatigue-related illnesses, the biggest hurdles in care and how patient involvement can help overcome them - How the Optimum Health Clinic is shaping better patient-centered care - Current gaps in patient-relevant care and how they can be addressed looking ahead in the future Join us for this insightful conversation as we explore the impact of patient involvement in healthcare and discuss what the future holds for those affected by complex fatigue-related illnesses. Don’t forget to subscribe and stay tuned for more discussions on meaningful and sustainable patient engagement in the Life Sciences sector!

In this inspiring episode, host Roger Legtenberg welcomes Trish Bartley, a true pioneer in bringing mindfulness to people with cancer. Since 2001, Trish has taught mindfulness, authored several influential books, and is recognized as a leading authority on mindfulness for people with cancer across Europe and beyond. What to Expect in This Episode: - Discover what inspired Trish to dedicate her work to mindfulness for people with cancer. - Gain insights through real-life examples of how mindfulness can make a tangible difference in the lives of people living with cancer. - Learn about her recent global initiative to make mindfulness more accessible, including efforts to reach communities in regions like Africa through her platform, Mindfulness and Cancer (https://www.mindfulnessandcancer.com). - Explore one of her essential books, “Mindfulness – A Kindly Approach to Being with Cancer,” (https://www.amazon.com/Mindfulness-Kindly-Approach-Being-Cancer/dp/1118926285/) and hear about her aspirations for the future of this important work . Bonus: If you’d like to experience a short mindfulness practice yourself, Trish generously guides a session around the 24-minute mark. Don’t miss this impactful conversation—tune in and be inspired by Trish’s wisdom and dedication to making mindfulness a compassionate companion for those living with cancer.

In this 8th episode of the Patients on the Move Podcast, host Roger Legtenberg sits down with Jennifer MacDonald, an Alpha-1 Antitrypsin Deficiency (AATD) patient ambassador from Mexico for Fundacion LovexAir, who is passionate about raising awareness of rare diseases in general and in particular for Alpha-1 AATD in Mexico, the Caribbean, and Latin America. Join this impactful conversation as they delve into Jennifer's personal journey, including all the struggles to be adequately treated in Mexico. Also, the needs and future outlook for improving healthcare & raising awareness in the region of, in particular, rare diseases, and the important role patients can play will be discussed.

In this 7th episode of the Patients on the Move Podcast, host Roger Legtenberg sits down with Pisana Ferrari, a well recognised pulmonary hypertension patient advocate from Italy, who started her advocacy work back in 2001 founding the Italian PH patient association AIPI and founding the European Federation for PH PHA Europe. Join this impactful conversation as they delve into what has been achieved in PH, what is still needed, the reasons for recently launched Alliance for Pulmonary Hypertension and the future role of patient engagement should play in the field.

In this 6th episode of the Patients on the Move Podcast, host Roger Legtenberg sits down with Steve Clark, a well recognised stage 4 cancer patient & advocate from the UK who has been living life with the disease for over 10 years so far. Join this impactful conversation as they delve into the importance of positive focus in treatment discussions & the role that patient engagement can play. Hear from Steve about his personal journey with stage 4 cancer and all his initiatives to contribute towards improved patient advocacy and patient-relevant care.

In this enlightening 5th episode of the Patients on the Move Podcast, host Roger Legtenberg sits down with Jaime Sanders, aka 'The Migraine Diva'. Join this impactful conversation as they delve into medical gaslighting, stigmas in migraine disorders, and potential counter strategies. Hear from Jaime about her personal journey with chronic illness, her unyielding efforts to eradicate healthcare disparities, and medical gaslighting while navigating the healthcare system.

Together with Bojana Mirosavljevic we discussed how patient advocacy and engagement can help to support patient access.

Our 3rd episode of our Podcast series discusses Patient Involvement in HTA processes.

Our 2nd episode of our Podcast series discusses Patient Community Driven Alliances.