At the Road Back Foundation, we often talk about the power of patients. Our organization exists because patients and families refused to accept that they had no options, no voice, and no role in advancing research. That spirit was on full display this week as Road Back Foundation Board Member Susan Lin, ScD, attended the World Orphan Drug Conference in Boston on behalf of our community.
For Susan, this work is deeply personal.
Before becoming a researcher, educator, and advocate, Susan was a patient living with diffuse systemic sclerosis (scleroderma), a devastating autoimmune disease that can affect the skin, joints, blood vessels, lungs, and internal organs. Like many patients, she was faced with a difficult diagnosis and an uncertain future.
Through treatment that included Minocin/minocycline therapy, Susan experienced a remarkable recovery. Drawing upon her professional expertise as an occupational therapist, she also developed strategies to address the hand contractures caused by scleroderma. Using the same problem-solving skills and rehabilitation principles she teaches to future occupational therapists, Susan worked to restore function to her hands and reclaim activities that the disease had threatened to take away.
Today, Susan is not only a recovered patient but also an occupational therapist, educator, researcher, and advocate who continues to help others facing similar challenges. Her journey embodies the resilience, determination, and hope that define so many members of the Road Back Foundation community.
That is why Susan’s participation at the World Orphan Drug Conference is so meaningful. She attends not only as a board member but also as someone who understands firsthand the fears, frustrations, and uncertainties that patients experience when searching for answers.
The World Orphan Drug Conference brings together researchers, biotechnology companies, pharmaceutical innovators, patient advocacy organizations, and rare disease leaders from around the world. The goal is simple but profound: accelerate the development of treatments and cures for patients who have historically been overlooked by traditional research and funding pathways.
Susan attended not simply as an observer, but as a representative of the thousands of patients, families, caregivers, healthcare professionals, and supporters who have been part of the Road Back Foundation’s mission over the years. Every conversation she had, every connection she made, and every opportunity she explored was done with our community in mind.
One story from the conference was particularly inspiring.
A mother shared the journey of her twin children, both diagnosed with a rare disease for which there was no cure. Faced with limited options and little hope from the traditional medical system, she chose to act. She and her husband started a foundation, raised awareness and capital, funded research, and became a driving force behind efforts to develop precision-based medical treatments.
Their persistence finally paid off. Two years ago, her twins received the first FDA-approved gene therapy for their condition.
Her message to the audience was both simple and powerful:
“Never underestimate a rare disease parent—or patient.”
Those words resonate deeply with the history of the Road Back Foundation.
In many ways, Susan’s own story reflects that same message. Her recovery demonstrates what can happen when patients combine determination, education, advocacy, and a willingness to explore every available path toward healing.
For decades, patients have been at the heart of our work. Many of the advances that have transformed the treatment landscape for chronic illnesses and rare diseases began because patients asked difficult questions, challenged assumptions, shared their experiences, and advocated for further research. Time and again, patient communities have demonstrated that they can be catalysts for change.
The Road Back Foundation itself was born from that same belief—that informed and empowered patients can help advance medical understanding and improve lives.
Conferences like the World Orphan Drug Conference provide opportunities to build relationships with researchers, advocacy leaders, biotechnology innovators, and organizations that share our commitment to improving patient outcomes. These connections can open doors to future collaborations, educational opportunities, research initiatives, and resources that ultimately benefit the communities we serve.
Most importantly, they ensure that the patient voice remains part of the conversation.
When decisions are being made about research priorities, clinical trials, funding, and innovation, patients deserve a seat at the table. Organizations like the Road Back Foundation help make that possible.
We also want to recognize that Susan’s attendance at this conference—and Road Back Foundation’s ability to participate in these important discussions—is possible because of the generosity of our donors and supporters.
Every donation, regardless of size, helps make this work possible. Your support allows us to engage with leaders in research and advocacy, stay informed about emerging developments, explore new opportunities, and continue representing the interests of patients and families.
When Susan attends conferences like this, she is there for you.
She is there for the patient searching for answers after a new diagnosis.
She is there for the parent advocating for a child.
She is there for the caregiver supporting a loved one through a chronic illness.
And she is there as living proof that recovery, resilience, and hope are possible.
To all of our donors, volunteers, supporters, and patients: thank you for making this work possible. Together, we continue to prove that patient voices matter—and that they can help shape the future of medicine.
Please consider making a donation to contribute to this outreach that has literally saved lives..