United Porphyrias Association

Patient Programs/EducationUPA ensures that the voice of the patient is at the center of this advocacy organization, representing each type of porphyria. Our primary and significant goal is to engage the patient community and enable patients, advocates, and families to join United Porphyrias through a Sign UP form available on our website. Though patients do not have to join in order to receive the most up-to- date information and to access our services, it will be the avenue for ongoing engagement. UPA is the primary source of information in the United States regarding the porphyrias. Programming UPA is focused on educational programming and activities that advance awareness, research, and treatment of the porphyrias. UPA will focus on curating our significant database of patients, caregivers, and advocates. This serves as an avenue to share important news and updates, to promote research opportunities, to engage in education and awareness events, and to enhance the patient experience through targeted messaging to various patient populations. Outreach: UPA develops patient community connection opportunities that will meet the needs of the varied demographics of our patient population. A primary goal continues to be to create smaller group, or regional, connections. Establishing these resources as arms of the UPA has supported extending our reach, especially when we launch efforts including meetings, studies, and new and ongoing research. We have branded our meetings Connect UP. UPA Connect UP is a secure community form that allows patient connections that are hosted, maintained, and moderated by our staff and trained volunteers. The goal of this effort is to allow for supportive connections that are not housed on social media. This allows for extended conversations for patients, and potentially physicians, who are not comfortable communicating via social media. Patient Education Meetings: UPA has held monthly patient education gatherings inclusive of each of the porphyrias. We will continue to engage the patient community in this way, using our expert physicians as webinar expert resources. We seek to do one per month over each year. Patient Navigation: The leadership and staff of the UPA are constantly fielding patient and physician inquiries via phone, email, website contact forms and social media. We educate on the diagnosis, management and treatment of porphyria based on the research and publications of the UPA Scientific Advisory Board and International Porphyria experts. We also guide access to research, porphyria centers, and local treatment. At no time do we ever offer medical guidance, diagnose patients, or interpret medical lab results. Porphyria Patient Day 2024 UPA collaborates with the US experts through both the Porphyrias Consortium and the American Porphyrias Expert Collaborative to organize and host a biennial International Porphyrias Symposium, inclusive of a scientific conference and patient day, that focused on most up-to-date information on the porphyrias and heme biosynthesis as well as new and emerging research that impact porphyria. Summer Camp Phototoxic diseases UPA will hosted a summer camp long weekend in 2024. Our team, in coordination with Shadow Jumpers, has developed a list of potential camp locations and will finalize a plan and launch registration in early 2024. Prior options for a family camp in this community are no longer functioning it is an unmet need for our youth and adult communities. Growth/Database (global capture patients) Global capture of the patient network has not been thoroughly leveraged. UPA is in a unique position to engage in the US and globally to expand our database of patients and will continue to be a focus.Mental/Emotional Health Support Evidence supports the concept that patients experience a mental health impact due to the nature of the disease. However, there are no existing resources that combat this community crisis. UPA develops resources to combat the emotional impact this disease has on quality of life.

Scientific Advisory Board EngagementEnhancing Patient Knowledge and Support Through Expert CollaborationThe United Porphyrias Association (UPA) is deeply committed to enhancing the knowledge and management of porphyria and other rare diseases within the patient community. Our Scientific Advisory Board plays a pivotal role in this endeavor. Comprising leading experts in the field, the board is responsible for gathering and disseminating critical information about disease management and emerging research that could significantly impact patient care and treatment strategies.Engagement and Education of Healthcare ProfessionalsRecognizing the importance of informed and up-to-date healthcare providers in the diagnosis and treatment of rare diseases, the UPA has developed a specialized segment on our website dedicated to healthcare professionals. This resource provides comprehensive and current diagnostic, management, and treatment information to physicians both in the U.S. and internationally. As new research and guidelines emerge, we continuously update this segment to ensure that treating physicians have access to the latest information.Moreover, the UPA actively seeks training opportunities to engage with healthcare professionals across multiple medical specialties. Our goal is to foster a well-informed medical community that can effectively diagnose, manage, and treat porphyria, thereby improving outcomes for our patient community. Through these efforts, we aim to build a bridge between cutting-edge research and clinical practice, ensuring that every patient receives the best possible care.