From Regional Patient Advocate Fanny Schappler
My journey as a Regional Patient Advocate (RPA)
I officially began my journey as a Regional Patient Advocate (RPA) in September 2024, supporting the following countries: Germany, Switzerland, Austria, Israel, India, Sri Lanka, Bangladesh, Nepal, Pakistan and Afghanistan. Stepping into this role felt exciting and daunting, but I was eager to continue the meaningful work already established and carve my own path forward. I am grateful for the invaluable support of my fellow RPAs and the Leadership Team, who provided guidance and encouragement as I settled into the role.
In the past two months, my focus was the following areas:
- To learn from each MO and its leaders
- To understand their unique challenges and opportunities
- To get to know their personal story with HAE
- To understand how far each MO is on its advocacy journey.
It’s important for me to understand what value I can bring to each of my MOs, and I want to be an enabler. I support a variety of countries with differing healthcare landscapes; the journey of a patient from first symptoms to an established diagnosis and having a proper treatment plan in place is vastly different in each country. I feel it is critical for me to acknowledge this and first hear what objectives each MO has for the future so I can best support them along the way with the numerous tools HAEi has.
Having a helicopter view is one of the values the RPA can bring. I can identify best practices from country X and suggest them to country Y. Sometimes, there is no need to reinvent the wheel, and we can learn so much from the journeys others have paved before us!
In parallel to getting to know each country and its unique healthcare landscape, I also completed all the training modules available at HAEi Advocacy Academy during my first month. It’s incredibly resourceful, and I love the one-stop-shop approach and small bites on which each module is structured. It makes the information easy to digest and remember. I strongly recommend these modules to any of our members who want to step into advocacy!
What was the 2024 HAEi Global Leadership Workshop (GLW) like for you?
The GLW was nothing short of an exceptional experience. It provided a unique opportunity to connect with other RPAs, MO leaders worldwide (90+ countries represented!), and doctors from the countries I support. The interactive sessions and discussions were inspiring, and my favorite part was the case studies from MOs. Often enough, the challenges encountered in building and growing a patient advocacy group are similar. It can be daunting, and I imagine one may feel alone sometimes. Yet when you realize others have been in the same spot, embraced the challenges, and turned them into opportunities, it gives you the strength and motivation to reach your goal despite the obstacles along the way. As in many life situations, advocacy work is not a sprint but a marathon!!
What do you hope to achieve as an RPA for your region?
As an RPA, my primary goal is to build the capacity of the existing MOs in South Asia (some relatively new) and support a sustainable future for the long-standing MOs in DACH countries. In the short term, I hope to help the MOs increase their members and ensure they build the relevant infrastructure to be prepared for achieving their mission and growing along the way. In the long term, I am committed to ensuring all healthcare players know what HAE is and the importance of a diagnosis and management plan, as well as ensuring that our role as patient advocates is recognized for its central role in shaping policies. Which ultimately will lead to improved patient outcomes and a better life for persons living with HAE and their loved ones!