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The IEEPO Changemaker video series

The Changemaker video series puts a spotlight on patient leaders that are transforming healthcare and advocating for meaningful health policy change for their communities. 

The five-part series features patient advocate leaders from around the world and in different disease areas or from umbrella organisations, sharing their experiences and learnings and discussing how their work has been able to transform healthcare for patient communities, in both global and local settings.

The IEEPO CHANGE domain hopes to emphasise a ‘Think Global, Act Local’ approach; the video series promotes that global health policy can and should be driven by what is happening within communities on the ground. 

An overview of the Changemaker series by Nicola Bedlington

Nicola Bedlington, IEEPO CHANGE domain leader and former Secretary-General of the European Patient Forum, gives a brief introduction to the IEEPO CHANGE domain, the Changemakers and discusses what you can expect from the video series.

 

Watch the Changermaker Series Teaser Below

Changemaker spotlight (1/4): Durhane Wong-Rieger In conversation with Samuel Wiafe

Susan Thornton
Watch Durhane Wong-Rieger, President & CEO of the Canadian Organization for Rare Disorders in conversation with Samuel Wiafe, founder and director of the Rare Disease Ghana Initiative. Click the expand button below to watch the videos and get in dialogue with the changemakers!

During the ‘In Conversation’ video series, hear from Samuel, a healthcare professional and patient advocate, working to improve the standards of care for rare disease patients in Ghana. Find out more about how his work, and a multi-stakeholder approach to health policy, has transformed the way patients in Ghana access better diagnosis and treatments for their rare diseases and listen to his learnings for how patient leaders can make change for their own communities.

As part of the series, you'll also have the chance to read Samuel's 'how to guide' (also found in the LEARN Library) which aims to supplement the learning from the videos, inspire and give practical advice to patient communities advocating for change around the world. 

Video 1/3: How Samuel began his journey with the Rare Disease Ghana Initiative and how he was inspired to advocate for the rare disease community!
 
Video 2/3: The importance of working with multidisciplinary stakeholders to transform access to diagnosis and treatment for patients in Ghana!
 
Video 3/3: The challenges and successes Samuel has faced and what lies ahead for the Rare Disease Ghana Initiative!
 
 

Changemaker spotlight (2/4): Susan Thornton In conversation with Maja Kocić

Susan Thornton
Watch Susan Thornton, CEO of the Lymphoma Coalition in conversation with Maja Kocić, President of the Lymphoma Patients Association in Serbia. Click the expand button below to watch the videos and get in dialogue with the changemakers!

During the ‘In Conversation’ video series, hear from Maja about how her personal experiences as a patient, advocate and caregiver herself, strengthened her approach to improve access to innovative treatment and care for lymphoma patients in Serbia

Using ‘out-of-the-box’ thinking, Maja mobilised the media, health ministers and fellow patient advocacy organisations to secure the approval of new treatments, making care more equitable for cancer patients in Serbia.

As part of the series, you'll also have the chance to read Maja's 'how to guide' (also found in the LEARN Library) which aims to supplement the learning from the videos, inspire and give practical advice to patient communities advocating for change around the world. 

Video 1/3: What inspired Maja to become a passionate advocate for patients living with cancer and leader of the Lymphoma Patients Association!
 
Video 2/3: How Maja addressed the healthcare challenges in Serbia, and initiated an alliance of patient organisations to advocate for change!
Video 3/3: The critical role of using data to build evidence for change and how being part of the global Lymphoma Coalition strengthened Maja's work!
 

Changemaker spotlight (3/4): Brian Wallach

Brian Wallach
Watch Brian Wallach, patient advocate and founder of I Am ALS as he shares his experience of living with ALS. Click the expand button below to watch the videos and get in dialogue with the changemakers!
Brian has created a movement in his mission to improve the lives of ALS patients and wants to empower patients to embrace their story and be their own advocates to work for change .
Video 1/2: Brian discusses how patients can create an advocacy movement to inspire change!
 
 
Video 2/2: Brian discusses the importance of building coalitions to advocate for change!

 

Creating Change: The IEEPO EAC, Change domain build on Samuel, Maja and Brian's videos in their discussion about the 'Think Global, Act local' approach (4/4)

IEEPO CHANGE domain EAC
Watch this short video to hear the perspectives from the IEEPO External Advisory Committee (EAC), CHANGE domain on the Changemakers, Samuel, Maja and Brian’s experiences, and discuss how patient leaders around the world can apply these insights to their own work. Click the expand button below to watch the video and get in dialogue with the changemakers!

IEEPO 2021: Domain Overview

IEEPO 2021 will be organised around four key domains of engagement: THINK, LEARN, CHANGE and MAKE. Each domain has a unique focus and provides an opportunity for continued dialogue, co-creation and transformative collaboration.