Your Voice is the Most Powerful Tool in HS Advocacy
People living with hidradenitis suppurativa have been dismissed, misdiagnosed, and overlooked for too long. HS Connect is changing that, and it starts with you.
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You can help move HS advocacy forward in just a few minutes.
Advocacy Is How We Reshape the Future for the HS Community
Hidradenitis suppurativa affects an estimated 1% of the global population. It is a chronic, inflammatory skin condition characterized by painful, recurring boil-like abscesses, scarring, and systemic inflammation. Despite its significant impact on quality of life, HS is frequently misdiagnosed for years, dismissed as a hygiene issue, and excluded from policy conversations.
Advocacy changes that. When people living with HS speak up, share their experiences, and engage with healthcare systems, policymakers, and the public, they create pressure for better research funding, improved clinical guidelines, and meaningful insurance coverage.
HS advocacy is not one thing. It can look like:
• Sharing your story with your community online
• Contacting your elected representatives about HS-related legislation
• Speaking at a public comment hearing or roundtable
• Participating in clinical research or surveys
• Educating a provider, friend, or family member about what HS actually is
The average person living with HS waits 7 to 10 years to receive an accurate diagnosis. Advocacy shortens that timeline. Every voice added to this movement makes the condition harder to ignore.
Advocacy That Helps Must Also Be Accurate.
In the age of social media, health information spreads fast. That speed can save lives, and it can also cause harm. At HS Connect, we believe that effective advocacy is grounded in facts, respect, and community safety.
What responsible HS advocacy looks like:
• Using medically accurate language about HS (inflammatory condition, not a hygiene problem)
• Describing HS symptoms accurately, including boil-like abscesses and systemic inflammation
• Sharing your personal experience without making medical claims for others
• Citing credible sources, such as peer-reviewed research or guidelines from dermatology societies
• Directing community members to qualified providers rather than promoting unverified treatments
• Correcting misinformation with compassion, not shame
What we work to avoid:
• Framing HS as a hygiene issue or personal failure
• Promoting unproven “cures” or absolutist dietary claims
• Sharing graphic imagery without consent or content warnings
• Spreading fear-based messaging that discourages people from seeking care
Want to Be Part of This Change?
Responsible advocacy starts with informed advocates.
If you want to strengthen your voice and advocate effectively for the HS community, the HS Connect Advocacy Mentee Program is a great place to start.
HS Connect holds itself and its advocates to a clear standard: accuracy over virality. If a piece of content could confuse, shame, or mislead someone living with HS, it needs to be rewritten. This is what sets our community apart.
Ready to Become a Stronger Advocate? Join the HS Connect Mentee Program.
The HS Connect Advocacy Mentee Program is designed for people living with HS who want to use their voice with purpose, precision, and impact. Whether you are new to advocacy or looking to deepen your skills, this program gives you the tools, training, and community to show up powerfully for the HS community.
What You Will Learn (Program Highlights)
• How to tell your HS story in a compelling and safe way
• The science behind HS and how to talk about it accurately
• How to navigate media, social media, and public speaking
• How to engage with pharmaceutical companies, policymakers, and researchers
• How HS advocacy works at the local, state, and federal levels
• Community-driven discussion and mentorship from experienced HS advocates
Who This Is For
This program is open to adults living with HS or caring for someone with HS. No prior advocacy experience is required. We welcome advocates at every stage.
Cohort Details
| Format | Virtual, cohort-based program |
| Commitment | Details shared upon enrollment |
| Cost | Free to participants (community-supported) |
| Next Cohort | Sign up to be notified when enrollment opens |
Your Story is Evidence. Share it.
Years of lived experience with HS carry real weight in advocacy. Policy changes, clinical awareness, and public understanding all shift when people put a human face on what this condition actually costs.
We collect patient stories to use in:
• Legislative testimony and policy briefings
• Educational materials for clinicians
• Media outreach and awareness campaign
Before You Share: What You Should Know
You control how your story is used. We will always ask permission before featuring your story publicly. You may share anonymously. You will not be asked to disclose your full name, location, or medical history unless you choose to. Sharing your story is an act of advocacy, not an obligation.
Make Your Voice Heard Where it Matters Most
Legislative advocacy is one of the most direct ways to create lasting change for people living with HS. When constituents contact their representatives, it moves policy. You do not need political experience to do this. You need a story and a few minutes.
Below you will find ready-to-use tools for contacting your elected officials, commenting on proposed rules, and engaging in ongoing legislative priorities relevant to the HS community.
Action Item 1: Contact Your Representative About HS Research Funding
Current Ask: Urge your U.S. Representative to support increased funding for rare and chronic skin disease research, including hidradenitis suppurativa, through the NIH and NIAMS.
| Email Template Subject: Support Funding for Hidradenitis Suppurativa Research Dear [Representative Name], My name is [Your Name], and I am a constituent in [City, State]. I am writing to urge you to support increased federal research funding for hidradenitis suppurativa (HS), a chronic inflammatory skin disease that affects an estimated 1% of the U.S. population. [Optional: Share your personal HS experience in 2-3 sentences. Example: I have lived with HS for [X] years. I have undergone [procedures/treatments]. It has affected my ability to [work/parent/live without pain].] Despite its significant burden, HS remains underresearched and underdiagnosed. People living with HS wait an average of 7 to 10 years to receive an accurate diagnosis. Many are unable to access the treatments that do exist due to cost and coverage barriers. I respectfully ask that you support robust funding for the National Institutes of Health and the National Institute of Arthritis and Musculoskeletal and Skin Diseases, with specific attention to chronic inflammatory skin conditions like HS. Thank you for your time and your service to our community. Sincerely, [Your Full Name], [City, State], [Email or Phone] |
Action Item 2: Urge Insurers to Cover Biologics for HS
Current Ask: Contact your state insurance commissioner or employer benefits contact to advocate for coverage of FDA-approved biologic treatments for HS.
| Phone Script Script for Calling Your Insurance Provider or State Commissioner “Hello, my name is [Your Name] and I am calling to speak with someone about coverage for hidradenitis suppurativa treatments.” When connected: “I live with hidradenitis suppurativa, a chronic inflammatory disease. My physician has recommended [treatment name], which is FDA-approved for HS. My current plan [does not cover it / requires extensive prior authorization steps that delay care].” “I am asking you to review your coverage criteria for HS biologics and to consider the medical necessity of timely access to these treatments.” “Can you tell me the process for filing a formal coverage complaint or requesting a policy review?” Record the name of the representative, date, and any reference numbers from the call. |
Action Item 3: Submit a Public Comment
| When federal agencies open comment periods on insurance, drug pricing, or coverage rules, your testimony matters. We will update this section with active comment periods as they arise. Stay Informed on Open Comment Periods Sign up for our advocacy alerts and we will notify you when there is an active opportunity to submit a public comment on behalf of the HS community. |
Everything You Need to Advocate Effectively
This Community Has Waited Long Enough. Now Is the Time to Advocate.
The HS Connect Advocacy Hub exists because every person living with HS deserves accurate diagnosis, effective treatment, and a healthcare system that takes this disease seriously. None of that happens without community action.
Whether you are ready to share your story, join our mentee program, or send your first email to a legislator, there is a place for you here. Start wherever you are.