Photographer and Director Karen Haberberg was a featured speaker and attendee at the 2026 Women in RARE workshop, which was hosted by Sarepta from March 31 to April 2. The event brought together leaders and advocates across the rare disease space to generate ideas around policy-changes, in particular for caregivers. The event came on the heels of Rare Disease Day, Epilepsy Awareness Day, and International Women’s Day, and all participants received a copy of Karen’s rare disease book.
Haberberg is recognized for work that lives at the intersection of rare genetic disease advocacy, epilepsy awareness, and women’s leadership in healthcare. She is the author of two published books, “An Ordinary Day: Kids With Rare Genetic Conditions” and “After That Day: Stories of Epilepsy,” both documenting families and patients navigating complex diagnoses and forming a key part of her career.
“I was honored to be among such powerful women in the rare disease space,” shares Haberberg. “These are women who consistently push for critical change in a landscape where voices need to be uniquely unified to be heard. It’s a mission close to my heart, and I feel so fortunate for every opportunity I have to collaborate as a creator around rare disease topics and in healthcare.”
She currently serves on the boards of the Children’s Neuroblastoma Cancer Foundation and American Photographic Artists (APA). This summer, she will attend and photograph the Children’s Neuroblastoma Cancer Foundation event in July, continuing her hands-on involvement with the families and organizations she supports.
“One area of expertise we have company-wide is in the health and wellness space, and Karen is an incredible multi-tool with respect to those types of projects,” shares Open Swim Executive Producer Amyliz Pera. “We recently wrapped a patient-centric healthcare shoot with both interview and lifestyle content where she worked side by side with Director Bradley J. Ross to procure stills, compliment his work with additional social footage, and fly a drone to supplement the beautiful broadcast footage. Karen is a producer’s dream.”
In addition to her healthcare work, Haberberg continues to expand her commercial and branded projects alongside Open Swim and has contributed to projects for Amvuttra, Nutrafol, Strivectin, Empower Bank, Pfizer, and Vabysmo.
Beyond healthcare and advertising, Haberberg is deeply committed to education and has taught at the 92nd Street Y in Manhattan, leading courses in Portraiture, Shooting at Twilight, Lightroom, and NYC Through Your Lens. In March, she also taught “Storytelling After Dark” as part of the Noir NYC program at the International Center for Photography. Following that, she led a Milky Way photography workshop in Acadia, focusing on astrophotography and telescope imagery. She is also scheduled to speak at an Adorama-sponsored event on May 6th, in tandem with being the featured speaker on their podcast Coffee With Creators, hosted by Seth Mirana.
“It’s refreshing to be able to collaborate in the way we do,” expresses Open Swim Director/Founder Bradley J. Ross. “Karen and my DP trade ideas and share gear, and Karen and I discuss and plan every shoot we do together – we leave each other just a little bit of room to fulfill our individual creative visions. She also fits in with the Open Swim way of embracing a variety of passions and skills.”
Her fine art practice, showcased at karenhaberbergstudio.com, continues to evolve alongside her advocacy work. Most recently, she participated in a group exhibition at Soho Gallery, where she sold her featured image.
“Karen’s immense talent for capturing the humanity, joy, and vitality, which must persevere despite the hardship of living with rare disease, is wonderfully complimented by her genuine care, collaborative spirit, and passion for the art of the image,” says Publicis Health Productions Executive Producer, John Ancona, who has worked with Karen on multiple projects.
