HS Voices Connect Japan has officially begun its activities.
This is a patient-led initiative to gather the voices of people living with hidradenitis suppurativa (HS) and connect them with healthcare, research, and society.
Alongside chronic pain and other symptoms, difficulty finding understanding from others can leave people with HS feeling isolated.
In my own life with HS, there have been many times when I felt that our voices were not being heard and that our experiences were difficult to share.
HS Voices Connect Japan grew out of a wish to make room for those voices and create a place where people can feel comfortable sharing them.
HS Voices Connect Japan plans to work on the following:
- Sharing and recording patients' and families' experiences
- Dialogue and collaboration with healthcare professionals and researchers
- Sharing information to improve understanding
We will take things step by step, starting with what we can do.
No one is expected to speak up or share their story.
We respect anonymity and personal boundaries. Our priority is that everyone can choose a way of being involved that feels comfortable for them.
HS Voices Connect Japan is a small initiative that has only just begun.
We believe that, together, individual voices can open up new conversations with healthcare and society.
We will share updates on our activities through this website.
