HS Voices Connect Japan (HSVCJ) is a patient organization for hidradenitis suppurativa (HS). We record and share patients' experiences so they can be heard in healthcare, research, and society.
HS is a chronic condition with recurring inflammation and pain, but awareness remains limited and diagnosis can take a long time. Many patients experience isolation and anxiety along the way.
We want the challenges patients face, and the practical ways they manage daily life, to be better understood by others.
What we do
Bringing patient experiences
to healthcare, research, and society
- Listen
Everyday ideas and challenges
- Record and organize
Each person's experience
- to healthcare, research, and society
Share experiences
Our aims
We aim for a society where patient voices inform healthcare and research.
We want to make information and support easier to find, rather than leaving individuals to face isolation alone.
Our principles
- We respect expertise in healthcare and research
- We consider underlying structures as well as feelings
- We move forward gradually, without rushing
What matters to us
HSVCJ does not promote a particular treatment or way of thinking.
Every patient's experience is different, and the medical course of HS also varies widely.
Our guiding principles are:
- Respect for patients' experiences
- Respect for clinical expertise
- Maintaining a neutral position
These principles guide our work.
Rather than presenting information as definitive answers, we aim to provide a starting point for understanding.
Our role
HSVCJ aims to serve three roles:
1. When you wonder whether it could be HS
We provide information about the condition and seeking care for people who think, “Could this be HS?”
2. Sharing experiences and everyday approaches
After diagnosis, people may face challenges with work, relationships, and emotions, as well as symptoms.
HSVCJ is working to create opportunities to share experiences and practical ideas for everyday life.
3. Bringing experiences to professionals and society
Patients' experiences can offer valuable insights for healthcare and research.
We will explore ways to work with healthcare professionals and researchers while respecting each person's wishes.
Why “voices”?
HS is often not visible to others. Its pain and impact on daily life can be difficult for others to understand.
Patients' accumulated experiences offer many insights into treatment and everyday life.
HSVCJ hopes to record and preserve experiences that people have not previously had the opportunity to share.
Our activities
HSVCJ currently works on:
- Sharing information about HS
- Sharing and recording patients' experiences
- Preparing for dialogue with healthcare professionals and researchers
- Improving public understanding
We plan to gradually expand opportunities to connect and collaborate.
How we are run
HS Voices Connect Japan was founded by a person living with hidradenitis suppurativa.
We operate on a not-for-profit basis to share patients' experiences with healthcare professionals, researchers, and society.
Our logo
Connect Japan Hidradenitis suppurativa
Connecting patient voices
The circle represents individual voices, and the square represents social systems.
The logo reflects our work: bringing voices together and sharing them with healthcare and society.
Our plans
Hidradenitis suppurativa (HS) is still not widely understood.
Delays in diagnosis, difficulties sharing everyday challenges, and limited formal support can leave patients carrying these burdens on their own.
HS Voices Connect Japan aims to help change this, step by step.
Three changes we hope to make
1. Less isolation
We aim to create a place where people living with HS can find information they need and share experiences and practical ideas.
2. Stronger connections between patients and healthcare
Patients' experiences are valuable knowledge for healthcare and research.
HSVCJ will develop opportunities for dialogue with healthcare professionals and researchers, while respecting the voices of people living with HS.
3. Greater understanding and support for HS
We aim for a society that better understands HS and makes needed support and services accessible.
To work toward this, we will continue conversations with patients and others involved.
Future plans
The following outlines our plans for future activities.
HSVCJ is developing its work in stages.
Stage 1 | Build a foundation
- Share information
- Record patient voices
- Create a welcoming space
Stage 2 | Connect and collaborate
- Work with healthcare professionals and researchers
- Create opportunities to connect
- Improve understanding of HS
Stage 3 | Reach wider society
- Share patients' experiences with society
- Bring patient voices to people involved in systems and policy
- Develop ways to sustain support
Keeping our work going
Our priority is to remain a place where people can find information and connections when they need them, rather than to grow for its own sake.
We want today's experiences to be available to people who will live with HS in the future.
From our representative
I have lived with hidradenitis suppurativa for around 30 years.
HS is not included in Japan's designated intractable disease program, and formal support is limited. Patients can feel isolated, and practical knowledge about everyday life is not easily shared.
I founded this organization because I wanted to help change that, little by little.
I work as a designer. To me, design is a profession that gives form to people's voices.
I want to record patient voices and bring them to people working in healthcare, research, and policy. I hope this work can fulfill that role.
Tsuyoshi Kawakami, Representative, HS Voices Connect Japan
Choosing between our three websites
Our activities, your daily records, and a letter for today: find out what each website offers.
HSVCJ official website
Information about our activities and organization, collaboration with healthcare and research, and ways to help.
About our organizationLiving with HS
Read about HS and record symptoms, treatment, and questions for your doctor. Review everything in one place before an appointment.
Use Living with HSA Word Beside You
Daily letters for people living with HS. You can save words you would like to keep.
Read today's letterFAQs
Frequently asked questions about HSVCJ and our related websites.
Can I read the information if I have not been diagnosed with HS?
Yes. People who have not been diagnosed, and their families, are welcome to use the site. If you are concerned about recurring lumps or swelling, speak with a dermatologist.
Read “Could this be HS?”Can the website or recording tools diagnose HS or choose a treatment?
The website provides general information and helps you organize symptoms and questions. It does not diagnose conditions, assess disease severity, or recommend treatments based on your records. Please discuss diagnosis and treatment with a healthcare professional.
Read our note on medical informationWhat can I record on Living with HS?
You can record pain, symptoms, effects on daily life, and treatments or medicines used. Appointment notes let you save questions for your doctor and explanations you receive. You do not need to complete every item every day; use only what you need, when you need it.
How to use Living with HSDo I need to register to use Living with HS?
No account registration is required. You do not need to join the patient organization to use the website or its recording tools.
Living with HS FAQsWhere are my Living with HS records stored?
They are saved in the browser on your device. They do not automatically sync to another device or browser. Before clearing browser data or changing devices, save a backup from Data Management.
Open Data ManagementCan I show my records during an appointment?
In the Progress Summary, select a period to review symptoms, treatment, and appointment notes together. You can show the screen or read out relevant information during an appointment. Printing is also supported.
Open Progress SummaryWhat is A Word Beside You?
It offers daily letters for people living with HS. Use “Save these words” to keep letters you like. The saved letter numbers are stored in your browser and do not automatically transfer to another device.
Read today's letterCan I contact you about activities, media inquiries, or collaboration?
Please use the contact form for questions about our activities, media inquiries, or collaboration in healthcare and research. We will review your message and respond where appropriate. We are not a healthcare provider; please consult your healthcare team about individual diagnosis and treatment decisions.
Contact us
