We’re Building a Movement: What Advocacy Looks Like in the Scleroderma Community

Over the past few weeks, scleroderma advocates have been sharing their stories in advocacy meetings across the country, virtually and in person in Chicago, Denver, and Washington, D.C.

They met with policymakers, participated in training sessions, and joined voices with 1000 other advocates during Rare Disease Week on Capitol Hill. But what stood out most wasn’t just the policy conversations. It was watching advocates step out of their comfort zones, connect with larger advocacy communities, and discover the power of their own voices. With each conversation, their confidence grew as they realized their stories have the power to shape change.

For many of our advocates, this was their first time stepping into a state or national advocacy space. Walking into Rare Disease Week and seeing nearly a thousand people, each representing their own rare condition, can be nerve-racking at first. 

“The introduction to Rare Disease Week was overwhelming for a first-timer. To be in a room with hundreds of individuals all advocating for their rare disease was a humbling experience. One quickly realized scleroderma was just one in a sea of rare diseases.”  — Stephen

Then the overwhelm turns into connection. While each rare disease may affect a small number of people individually, together the rare and chronic disease community is a powerful collective voice.

Learning How the System Works

Every advocacy opportunity begins with preparation. Training sessions help advocates better understand the systems that shape healthcare access, research funding, and federal/state policies that impact people living with rare and chronic diseases. These sessions offer a glimpse into how healthcare decisions are made.

Stephen shared:

“I became more aware that the healthcare system is not designed with the individual in mind. Someone in the insurance industry is deciding what is covered and what is not, all based on cost. So sitting in front of a legislative aide explaining… this is what happened to me… this is what it cost me… this is what needs to be changed… and here is the pending House Bill or Senate Bill that can bring change. Please support this change. This will make a difference in hundreds of thousands of households.”

Advocacy turns personal experiences into powerful tools for change. Patients and caregivers bring something to these conversations that no report or policy brief can provide…lived experience.

Kimberly explained:

“Advocacy is not about being perfect or having all the answers. It’s about showing up, sharing your truth, and helping create change for the patients who will come after us.”

Turning Isolation Into Community

For many people living with rare diseases, the journey can feel isolating. Finding others who understand the experience can be transformative.

Briana reflected on why she chose to participate: 

“The further I navigate through this rare disease, the feelings of lack of support or loneliness can be overwhelming. I decided to move from passively watching to getting involved. I wanted to meet people on my side of the street who know the struggles… this sense of familiarity is very comforting to me.”

Advocacy events create space not only for policy conversations but also for community building and shared learning. Esthela reflected, “Even with different diseases, we all speak the same language. That is powerful.”

Developing the Next Generation of Advocates

One of the most exciting moments from the past few weeks has been watching new advocates step into leadership. Two young adult caregivers joined our advocacy team this year, bringing fresh perspectives and curiosity about the world of policy and public service.

During Rare Disease Week, one young advocate struck up a conversation with a congressional intern who shared her path to Capitol Hill, and introduced her to a college major she had never even heard of before. Sometimes advocacy doesn’t just change policy. It opens doors and expands futures. Do you have a young adult in your life who is looking to expand their experience? 

We also saw remarkable growth from advocates returning for their second year. Last year, Briana described herself as a “fly on the wall,” absorbing everything around her and learning how advocacy works. This year was different. In a crowded meeting with dozens of advocates competing for limited speaking time, Briana stood her ground and secured a 90-second opportunity to ask lawmakers to support funding for scleroderma research.

“These opportunities are slowly taking me out of my shell and helping me find my voice, and frankly myself.” - Esthela

Advocacy Is Built on Many Paths

Advocates come to this work from many different backgrounds. Some are newly diagnosed patients. Some are caregivers or other family members. Some bring leadership experience from other fields.

Stephen, who has a background in the military, nonprofit leadership, and volunteer service, described what motivates him to continue advocating:

“If someone is interested in being a patient advocate, do it. To paraphrase a line from the play Hamilton, be in the room where decisions are happening.”

Others are driven by the hope that research and policy change will improve the future for people living with rare diseases.

Ronna explained:  

“I chose to participate in Hill Day for myself and for others dealing with rare diseases to help illuminate the need for research. Seeing research funded and progress gives me hope when I’m feeling like there is no light at the end of the tunnel.”

These diverse experiences strengthen the advocacy community and help ensure that policymakers hear from a wide range of voices. The next time someone asks you, how can I help, let them know about our advocacy team! 

For anyone wondering whether they should get involved in advocacy, Briana offers simple advice:

“Get involved in advocacy as much as possible. The work is rewarding, and the more people who can help out, the better our messages will reach more people.”

Advocacy doesn’t require policy expertise or a perfect story. It starts with something much simpler:

Showing up, sharing your experience, and standing alongside others who are working toward change.

When people do that together, something powerful happens. They find their voice. They build community. And they help shape a future where people living with rare diseases are heard.

We are grateful to organizations like the EveryLife Foundation, Pulmonary Fibrosis Foundation, Pulmonary Hypertension Association, Illinois Rare, and the Chronic Care Collaborative Colorado for inviting scleroderma advocates to participate in their advocacy events.

Visit our Advocacy page to learn more about the team and how you can join. Or email Maria Dastur at mdastur@stopscleroderma.org