HS Connect University
Build your voice. Move HS advocacy forward.
HS Connect University is the home for advocacy education, mentorship, story-sharing tools, and action resources for people who want to create real change for the HS community.
What this is
A program to build and empower HS advocates
HS Connect University helps advocates build confidence in storytelling, medical literacy, legislative advocacy, systems navigation, and responsible community leadership.
Structured Learning
Complete guided educational modules focused on HS advocacy, healthcare systems, and communication.
Advocate Development
Strengthen your public speaking, storytelling, and confidence as a patient advocate.
Legislative Advocacy
Learn how to engage with lawmakers, healthcare leaders, and systems decision-makers.
Community Connection
Join a growing network of advocates working together to improve the future of HS care.
Advocacy Hub
Legislative advocacy is one of the most direct ways to create lasting change for people living with HS. You do not need political experience to do this. You need a story and a few minutes.
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.]
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. I respectfully ask that you support robust funding for the NIH and NIAMS, with specific attention to chronic inflammatory skin conditions like HS.
Sincerely,
[Your Full Name]
[City, State]
[Email or Phone]
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
“Hello, my name is [Your Name] and I am calling to speak with someone about coverage for hidradenitis suppurativa treatments.”
“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].”
“Can you tell me the process for filing a formal coverage complaint or requesting a policy review?”
Record the representative’s name, date, and any reference numbers from the call.
Insurance ResourcesSubmit a Public Comment
When federal agencies open comment periods on insurance, drug pricing, or coverage rules, your testimony matters.
Sign up for advocacy alerts and HS Connect will notify you when there is an active opportunity to submit a public comment on behalf of the HS community.
Get Advocacy AlertsAdditional learning resources
Explore quick videos, advocacy tools, and action steps that support your HS Connect University learning.
What HS Is and Is Not
Learn how to explain HS clearly and correct common misconceptions.
Watch video →
Talking About HS Online
Tips for sharing your story responsibly and protecting your boundaries.
Watch video →
Legislative Glossary
Understand common advocacy and policy terms before speaking with decision-makers.
Watch video →
Request a Meeting
Learn how to request a meeting with your representative or their staff.
Open resource →
Advocacy Playlist
Continue learning through HS Connect’s advocacy-focused video content.
Watch playlist →
Participate in HS Research
View open HS clinical trials, surveys, and research opportunities.
View opportunities →Recruiting Studies, Surveys & Clinical Trials
Research participation helps improve understanding of HS, barriers to care, treatment access, pain, and real patient experiences. Explore opportunities currently recruiting through HS Connect and research partners.
Teen HS Pain Research Study
Are you a teen living with hidradenitis suppurativa (HS) — or the parent of a teen with HS?
Researchers at Emory University are conducting a fully virtual research study to better understand pain in adolescents with HS, how HS-related pain changes over time, and how teens with HS may be better supported in managing pain.
Participation may include:
• Virtual study visits
• Daily electronic surveys for 16 weeks
• Optional interview
Additional eligibility requirements apply, including no plans for surgery during the 16-week study period.
Why participation matters
Patient participation helps researchers better understand HS experiences, treatment barriers, delays in diagnosis, pain patterns, and quality-of-life impact.
Types of opportunities
- Clinical trials
- Anonymous surveys
- Focus groups
- Research interviews
- Educational studies
Looking for more?
Explore all currently recruiting HS research opportunities, surveys, and clinical trials through the HS Connect Clinical Trials Hub.
Browse opportunities →Apply to HS Connect University
Complete the application below to apply for the HS Connect University mentorship and advocacy training program.
Your voice matters in the future of HS care.
HS Connect University exists to help advocates turn lived experience into meaningful education, systems change, and community impact.