Caregivers at the Heart of Amyloidosis
Caregivers have stories, questions, fears and experiences that deserve space.
For World Amyloidosis Day 2026, Amyloidosis Alliance presents a special Round Table Discussion dedicated to caregivers and their essential role in the amyloidosis journey.
Filmed in Paris and available worldwide on October 26, this special conversation will bring together caregivers, patients and healthcare professionals to share experiences, expertise and practical perspectives.
Under the theme “Caregivers at the Heart of Amyloidosis,” the discussion will explore how people become caregivers, how amyloidosis can transform relationships and family roles, the place of caregivers within the medical journey, the emotional and psychological impact of caregiving, and the importance of supporting caregivers themselves. World Amyloidosis Day 2026 Care…
At the heart of the conversation is one essential question:
Who takes care of the caregiver?
Becoming a caregiver
Most people do not decide one day to become a caregiver. Very often, it happens gradually.
A partner, a son, a daughter or another loved one begins by helping with an appointment, organising everyday tasks or providing emotional support. Little by little, responsibilities can grow and relationships can change.
During the round table, caregivers and patients will share their personal experiences of this transition: how amyloidosis entered their lives, when they began to recognise the caregiving role, and how it affected their relationships, family life and professional lives. World Amyloidosis Day 2026 Care…
The conversation will also explore the particular experience of caring for a parent, when long-established family roles can begin to change and the person who once looked after you may gradually become the person you need to look after. World Amyloidosis Day 2026 Care…
Caregivers as part of the care journey
Caregivers can also play an important role throughout the medical journey.
Medical appointments can involve a great deal of information, uncertainty and preparation. Caregivers may help prepare questions, remember important information, take notes or share observations from everyday life that can be valuable to healthcare professionals.
The discussion will look at how caregivers can be involved in this journey while ensuring that the patient’s own voice and autonomy remain central. World Amyloidosis Day 2026 Care…
The round table will bring both medical and psychological perspectives to these questions, alongside the lived experiences of patients and caregivers.
When caregiving becomes too much
Caregiving can begin with things that seem relatively small: an appointment, a phone call, some extra organisation. But gradually, those responsibilities can accumulate. World Amyloidosis Day 2026 Care…
When does helping become too much? How can caregivers recognise that they are reaching their own limits? Why can asking for help be so difficult? And how can families, friends and healthcare professionals recognise when a caregiver also needs support?
These questions will be explored openly during the round table, including the emotional and psychological impact of caregiving and the importance of protecting the caregiver’s own identity, relationships, work, interests and quality of life.
Data from the AMYlife Global Amyloidosis Survey will also help put these experiences into perspective: 51% of caregivers say that assisting patients is a daily job, while 39% have had to adapt their work situation. World Amyloidosis Day 2026 Care…
The survey also shows the broader impact caregiving can have on a person’s life: 69% of caregivers feel their quality of life has deteriorated, and 45% have had to give up travelling. World Amyloidosis Day 2026 Care…
Taking care of the caregiver
Supporting caregivers should not only mean helping someone become better at caregiving. It should also mean helping them remain themselves.
Finding time for friendships, work, family, personal interests or simply moments when they are not defined by their caregiving role can be essential.
Through personal stories and professional perspectives, the discussion will explore what meaningful support can look like, how family and friends can help, what patient organisations can do, and why caregivers should not feel guilty for needing time and support for themselves. World Amyloidosis Day 2026 Care…
Voices from across the amyloidosis community
Moderated by Marco Horanieh, the Round Table Discussion will bring together different voices and perspectives from across the international amyloidosis community:
- Dr Laura Obici (Italy) :Physician and Amyloidosis Specialist
- Julie Pompougnac (France) :Psychologist
- Mascha Hammink : Caregiver
- Ric-Paul Hammink : Patient
- Emmanuel Jammes (France) :Caregiver
- Barbara Coelho (Brazil) :Caregiver
- Jaime Christmas (New Zealand) : Caregiver
Their experiences and expertise will be complemented by pre-recorded interviews and short video contributions, allowing lived experience and professional expertise to respond to one another throughout the conversation. World Amyloidosis Day 2026 Care… World Amyloidosis Day 2026 Care…
Shared worldwide on October 26.
This conversation is intended for the entire international amyloidosis community.
The World Amyloidosis Day 2026 Round Table Discussion : “Caregivers at the Heart of Amyloidosis” will be available worldwide on October 26 through Amyloidosis Alliance’s social media channels, YouTube channel and directly here in our website.
We invite patients, caregivers, families, healthcare professionals, patient organisations and everyone affected by amyloidosis to join the conversation, listen to these voices and help make the experience of caregivers more visible.
Because caring for someone matters.
And taking care of the caregiver matters too.
Save the date : October 26, 2026.
Follow the conversation. Share it. Help make caregivers visible.