What started as a vision to create a space for a community that often feels overlooked became something much bigger than I could have imagined.
Rather than separating us by conditions, I wanted to create a space that brought rare, chronic, & injured or burn survivor skin communities together, because while our conditions may look different, so many of our experiences overlap. The isolation. The questions. The misunderstandings. The impact on confidence and mental health. The need to feel seen.
From our Patient and Creator Panel, where individuals courageously shared their stories and journeys, to our Dermatology Professionals & Founders Panel, where we talked about patient-centered care, innovation, representation, and the future of inclusive skincare — every conversation reminded me why creating these spaces matters.
And then there was the networking hour, watching patients, students, healthcare professionals, founders, creators, advocates and allies meet one another, exchange stories and form connections that I hope continue far beyond this one afternoon.
To every speaker who shared their story, every panelist who showed up, every partner who believed in this vision, and every volunteer who helped bring it to life, and every single person who walked through those doors — thank you. 🫶🏽 A huge thank you to @creativefuturescollective x Soho House program, my mentor Iman @forhersocialclub, and @beiersdorf @foundationforichthyosis & @phoilex.releaf for allowing this project come to life and @milkandhoneyspa for gifting our local speakers and volunteer team members
Most importantly, thank you to our rare and chronic skin community for allowing SKINRARE to be a small part of your journey.
Growing up, I wished there was a room like this. Now, I’m grateful that we’re creating it together. Rare belongs in every room and this is only the beginning.🤍 #raredisease #chicago
Creator/Patient Panel
Jeyza Kaelani (Lamellar Ichthyosis Advocate), Jada Jones (Eczema Advocate), Paige Billiot (Birthmark Advocate), Shawn Thomas (Psoriasis Advocate), Reeva Gupta (Burn Survivor Advocate), and Emma Betsinger (Congenital Melanocytic Nevi advocate)
Dermatology & Founders Panel
Dr. Andrea Rustad (Author of Skin-Vincible), Michelle Soo In Lee (founder of INYOUN Skin), Kelly + Laura (founders of Tied Sunwear), Sarina Pilaroscia (founder of Phoilex), and Sam Burke (founder of Hale)
Nervous System Regulation Session Led By Turquoise Peart
Social Hour
Matcha & Coffee Pop Up by Solstice Coffee NWI
Education & Representation:
Decoding Darier’s – Rare Skin Disease Organization (Darier’s Disease)
Lucilleh Pol – Epidermolysis Bullosa (EB)
Diversity In Dermatology – health professional organization dedicated to advancing a diversified and scientific approach to skin care education, cultural competency, and healthcare equity.
