For more than a decade, Rachel Gomel has been the heart of the PSC Partners Patient Registry. Her vision and dedication turned an idea into a global resource that empowers patients and drives research forward.
As she steps back from her role as Director, we extend our deepest gratitude for her extraordinary leadership. Rachel will remain involved in an emeritus capacity, continuing to share her wisdom and support with the PSC community.
Below, PSC Partners staff and board members share their messages of thanks and admiration for Rachel’s lasting impact.
Tributes to Rachel
Rachel will be missed by everyone in this community, and especially by me, since we have become inseparable friends through PSCP. Rachel always approaches every situation in her special silent way, taking in all the information and then coming back to the team with her brilliant suggestion. Rachel is brilliant, wise, compassionate, loyal and a deep thinker. I always listen to her suggestions! She has been an incredibly valuable volunteer for PSCP for decades. In addition to starting and heading our amazing registry, she has been a leader. It was Rachel who led the way for our being chosen to be one of the few organizations chosen to be part of the first CZI cohort, which has been a game changer for PSCP. Rachel does a lot of her work behind the scenes, talking for hours with patients and caregivers who need some TLC. Throughout the years, she has played a huge role in building PSCP’s reputation by building relationships with providers, researchers, pharma and FDA. I am glad that she will stay on with us for special projects. Her understanding of PSCP’s history and her integrity are invaluable! We love you Rachel! - Ricky Safer, Founder and CEO
As Rachel Gomel transitions from her formal role with PSC Partners, I want to take a moment on behalf of our entire organization to recognize the immeasurable impact she has made over the past 20 years. Rachel’s legacy is woven into the very fabric of PSC Partners. From the earliest days of grant writing and advocacy to the groundbreaking establishment of the PSC Partners Patient Registry, Rachel’s intellect, compassion, and vision have propelled this organization forward. She has been a tireless advocate, transforming her deep scientific knowledge and personal passion into tangible progress for patients and families affected by PSC. Her fingerprints are on every milestone we’ve achieved: the formation of our grant program, the advancement of patient-partnered research, the creation of an ICD-10 code for PSC, the FDA PFDD meeting, and the collaborations that have positioned PSC Partners as a trusted voice in the rare disease community. Rachel’s strategic thinking, her tenacity in the face of challenge, and her heart for collaboration have shaped the culture of excellence and compassion that define who we are today. Rachel, on behalf of the entire PSC Partners family, past, present, and future, thank you for your visionary leadership and your unwavering belief in the power of community to drive change. Your legacy will continue to inspire our collective journey toward a world where PSC is curable and patients thrive. With our deepest gratitude and admiration. - Audra Fleming, Executive Director
Rachel, it's no exaggeration to say your work has improved the lives of every single person affected by PSC. From building treasured partnerships with researchers across all fields, to advocating for patient rights and needs in clinical trials, to calling individual Registry participants to help them sign up in the early days, to carefully explaining how changing a single word makes a huge difference in how a survey or article will be received, and so much more, you have made an indelible impact in this community. Your unwavering moral compass, meticulous attention to detail, and tireless dedication to our cause are beyond compare. I treasure our friendship and your guidance in steering the Registry and our work at large to even greater heights. You leave impossibly big shoes to fill, and it's my hope that our team will continue down the course only you could make possible. - Brian Thorsen, Patient Registry Director
Rachel has been an incredibly active, involved volunteer with PSC Partners since shortly after PSC Partners was formed by Ricky Safer. She has been involved in innumerable projects due to her wide range of interest and knowledge, as well as her amazing writing skills. Her commitment as a member of both the PSC Partners and PSC Partners Canada Board of Directors has been incredible. Just as important, Rachel has provided support, guidance, connections, friendship, and care for so many people living with PSC. There is no question… Rachel works night and day as PSC Partners searches for treatments and provides support and education for everyone in the PSC community. I know this from receiving emails at all hours of the day and night, as well as knowing she has fallen asleep while typing during the wee hours of the night! Thank you for everything you do for our community! - Joanne Hatchett, Sr. Advisor, Medical, Science & Patient Advocacy
It's hard to fully capture the impact Rachel has had on PSCP and our patient community. Her dedication, wisdom and unwavering compassion have left an indelible mark - not only on the work itself but on all of us who have supported the mission. I'm deeply grateful for Rachel's mentorship and guidance. She has a rare gift for making others feel capable, even in the most uncertain and unpredictable circumstances - empowering patient families to face the unknown with courage and strength. Her voice, vision and values have become part of the fabric of PSC and will live forever in the registry she helped shape, the families she uplifted and the people she inspired. Rachel, thank you for everything. - Leah Sciabarrasi, Board Member
From the moment we met in Jacksonville at the Mayo conference , I knew you were someone special. Your kindness, strength, and compassion have touched my life in ways words can’t fully express. You became not just a friend, but my angel and big sister—someone who lifted me up, made me laugh, inspired me through every challenge; and comforted me through some very scary days. There are too many memories to count, but each one is a reminder of your beautiful spirit. You will always hold a special place in my heart, my dear friend. - Joanne Grieme, Board Member
Rachel, your kindness, wisdom, and incredible dedication have left a lasting mark on everyone who’s had the privilege of working with you. Your passion for patients, your steady leadership, and your ability to turn vision into action have inspired me deeply. Through every milestone, you’ve led with heart, lifting others and creating a sense of purpose and unity that defines PSC Partners. Your legacy is one of compassion, courage, and unwavering commitment to the community you helped build. Thank you for your guidance, your generosity, and your friendship. You’ve truly made a difference — and your spirit will continue to shine through all that PSC Partners does. -Stephanie Hamilton, Director of Strategic Partnerships
Rachel is truly one of the nicest, sweetest, and smartest people I have ever had the pleasure of working with. We worked alongside many others to advocate for and ultimately get K83.01 approved for use in the US. Her dedication, kindness, and intelligence were instrumental in the success of the Registry, and I feel incredibly fortunate to have had the opportunity to collaborate with her. - Trish Stoltzfus, Board Member
I’ve had the privilege of calling Rachel both a colleague and a friend over many years. I still remember her talking about her vision of the Registry—before a single record existed—and how she then relentlessly brought it to life. Rachel avoids the spotlight, but her thoughtful follow-up notes after meetings are legendary for their insight. Her intelligence and dedication have had an enduring impact on our community. While she’s taking a well-deserved step back, I hope we’ll continue to benefit from her wisdom for years to come. - Scott Malat, Board Member
Rachel, you leave behind giant shoes—built from grit, grace, and a fierce love for this community. You took an idea and turned it into a living registry that respects every patient’s story, turns data into action, and earns trust at every step. When you were told no one would help, you did it anyway. I was proud to pretend to be patient zero during so many test iterations you conducted before launch—proof of your determination and attention to every detail. Your steady hand, high standards, and warm heart gave us a blueprint for how to do the hard work the right way. As you retire, we’re grateful for the systems you built, the people you lifted, and the hope you made practical. We’ll keep walking forward—following the clear footprints you left. - Fred Sabernick, Board Member
Rachel, I first met you at the 2014 PSC Partners conference in Denver at the Patient Registry display booth. The Registry had just launched a month or two before, and I recall seeing your passion for this project and for PSC Partners. Little did I know that, a few years later, I would be joining you as part of the Registry team. It’s impossible to overstate the impact you have had on PSC research through the Registry, grant-writing, building relationships with PSC experts, and so much more. Your humble, hard-working demeanor and your compassion for our entire community is a model for us all. We love you! Thank you for ALL you have done and continue to do. “Keep on swimming!" - Sharon Nanz, Patient Registry Coordinator
