HS Voices Connect Japan (HSVCJ) is a patient organization that records and shares the experiences and practical knowledge of people living with hidradenitis suppurativa (HS). Here are some ways to support our work.
Ways to help
You can share information, contribute a personal account, help create materials, or donate. Please choose a way that suits you and only take on what feels manageable.
1. Share information
Help information reach others
Share our website or social media posts
- Let others know the name hidradenitis suppurativa (HS) and where to find reliable information
- Help create an environment where people who have not yet sought care feel comfortable doing so
2. Share your experience
We welcome accounts of everyday challenges and practical ideas, as well as experiences of seeking care and treatment. We aim to organize these experiences so they can be shared with healthcare, research, and society.
- Practical ideas for daily life: clothing, care products, work, and school
- Your experience of seeking care and the challenges before diagnosis
- What helped or proved difficult in treatment and care
- Understanding from others, and challenges at home or work
We do not publish personally identifying information. Accounts are organized according to their intended use and anonymized where necessary.
3. Donate
We accept donations to help sustain our activities.
Donations will support work such as:
- Maintaining our website and information sharing
- Organizing and sharing patients' voices and experiences
- Creating materials and preparing awareness activities
- Building a foundation for ongoing operations
If you would like this work to continue and are able to help, we would be grateful for your support. Please only give what you feel comfortable giving.
About donations
4. Help with content and organization
Put your skills
to use
- Organizing information: collecting links, compiling news, and making text easier to read
- Design and production: images, documents, and video editing
- Interviews and documentation: listening to personal accounts and helping prepare events
- Translation: for example, Japanese summaries of information from overseas
Suggestions for other ways you could help are welcome too.
5. Collaborate in healthcare and research
We would like to work with healthcare professionals and researchers on ways to bring patients' everyday experiences into clinical care, research, and policy.
Examples include:
- Identifying patient needs: organizing challenges and sharing gaps in information
- Developing patient information together: when to seek care and precautions for self-care
- Discussing surveys and research: handling personal experiences and ethical considerations
We do not promote specific treatments or viewpoints.
6. Support us as a company or organization
We welcome potential collaboration with companies and organizations that helps information reach patients, supports quality of life, or reduces isolation.
Examples of potential collaboration:
- Help with awareness and information sharing, including opportunities to reach more people
- Support patient materials through printing or production
- Help organize events and online gatherings
- Discuss joint projects that respond to challenges experienced by patients
Please get in touch even if you are still exploring what you could offer.
Contact
Please use the link below for inquiries about support or collaboration. We will review your message and respond as appropriate. You can also contact us here with questions about donations.
Contact formIt may take us a few days to reply. Thank you for your understanding.
Our approach to accepting support
- We do not endorse particular treatments or viewpoints
- We prioritize the dignity and safety of people living with HS
- We respect personal information and privacy, and anonymize information according to its intended use
- We aim for sustainable support that does not put pressure on anyone
