Steffens Scleroderma Foundation

The Degos Patient Initiative is changing how future health professionals learn.

This first of its kind event brought real stories and real insight directly into the classroom. Students listened. Patients led. Learning changed.

We’re proud that the last 10 years of work includes this important event that lifts rare disease voices and strengthens education for the next generation.

Learn more about the Degos Patient Initiative in our March 2026 newsletter:
https://www.degosdisease.org/news

Help us keep this momentum going. Share this post to support our mission.

Scleroderma care relies on many disciplines.

This month, we recognize the wide range of professionals who support people living with scleroderma and Degos Disease.

Medicine, nursing, pharmacy, nutrition, public health, social work and occupational therapy each play a role. Many more contribute their expertise every day.

Their combined work strengthens care and moves awareness forward.

Your voice helps this mission grow.

Share this post so others know that we support education, research and advocacy for the scleroderma community.

Father’s Day can hold many emotions. For some, it’s a day of celebration.

For others, it brings grief, memory or longing. For caregivers and families facing rare disease, it may also be a day that reminds us how much love shows up in quiet, steady ways.

Today, we honor the fathers, grandfathers, father figures and caregivers who support, protect, encourage and stay present.

We also hold space for anyone for whom this day feels complicated.

In our community, every story of love, loss, strength and support matters.

Share this post to honor someone who has shown up with care, strength or love.

For 10 years, we’ve worked to help more people understand scleroderma.

During Scleroderma Awareness Month, we’re highlighting how education can support awareness, diagnosis, research and better care.

Hands tell part of the scleroderma story. Every shared post helps more people see how this rare disease can affect daily life. Share this post to help raise awareness.

Want to learn more about the science? Take a deep dive into the research. https://www.steffens-scleroderma.org/our-research

Juneteenth reminds us that freedom is more than a moment in history. It is a continuing call for dignity, equity and community.

Today, we honor resilience. We remember those who worked, cared, organized and led so others could move closer to justice and opportunity. That work matters in health too.

Health equity starts with listening to people’s lived experiences. It means making information easier to access and understand. It means helping every person feel seen, heard and supported.

As we recognize Juneteenth, we recommit to awareness, education and advocacy rooted in respect for every community we serve.

Share this post to honor Juneteenth and support a more informed, equitable and compassionate future.

We are proud to partner with Hofstra University.

Together, we are helping advance rare disease education through interprofessional learning.

Students learn from patients, faculty and one another. They gain a deeper understanding of communication, teamwork and compassionate care.

This partnership is a significant moment in the last 10 years. We continue to expand awareness, strengthen education and bring the lived experience of rare disease into the classroom.

Follow along as we build partnerships that move rare disease education forward.

Listening changes care.

When patients share their stories, they help future healthcare professionals understand more than symptoms.

They help them understand the person, the uncertainty and the real-life impact of rare disease. That kind of learning matters.

Interprofessional education (IPE) brings students from different fields together. IPE helps them listen, ask better questions and see care through a more human lens.

As we celebrate 10 years, we’re proud to support education shaped by patient voices, collaboration and lived experience. Share this post to help more people understand why listening is essential to better care.

Read patient stories that bring rare disease experiences, resilience and community into focus: https://www.steffens-scleroderma.org/patient-stories

Get your tickets today for Cruise for a Cure, a summer tradition with a purpose.

Join us on Sunday, July 26, 2026 for a meaningful afternoon on the Hudson as we come together to honor Captain Lou Renna and support the work that moves awareness, education and research forward.

Your ticket helps support research, education and awareness. Reserve your spot and be part of this special event.

Learn more here: https://www.steffens-scleroderma.org/events/cruise-for-the-cure-2025-9jbl3

Get tickets here: https://www.dutchapplecruises.com/public-cruise-calendar

Patient experience is expertise.

For people living with rare diseases like scleroderma and Degos disease, the daily realities, unanswered questions and moments of being heard all carry knowledge that can shape better care.

Through interprofessional education, patient educators like Amy Gietzen help future healthcare professionals learn from lived experience in a direct and meaningful way.

That kind of learning makes rare disease education more human, more connected and more responsive to the people it is meant to serve.

As we celebrate 10 years, we honor the patient voices helping guide education, awareness and the future of care.