Working Committees
APEX members further research, education and awareness initiatives through active participation and collaboration in committees. Learn more about the work of each committee below:
Interested in participating on an APEX working committee?
Become a member or contact us!
Lead: Bruce Wang, MD (transitioning from Herbert L. Bonkovsky, MD)
The Committee on Membership of APEX considers applications for membership and considers persons who may be eligible for honorary membership or other honorary recognition from APEX. The Committee makes recommendations to the board of directors regarding new member candidates, for all categories of membership, based upon their applications and supporting materials. The Committee makes recommendations to the board of directors regarding possible honorary members. The Committee considers concerns or issues raised by members and/or applicants for membership as may be required.
Lead: Robert J Desnick, MD, PhD
Education Objectives
Develop educational programs for both physicians and patients that provide information on the clinical manifestations, diagnostics, and treatment of the eight major Porphyrias and their variants. The committee members will review and update online information on various websites including Gene Reviews, NORD, Up-to-Date, commercial diagnostic lab sites as well as the UPA, and APEX websites, etc. The committee will coordinate efforts with the Training & Career Development Committee and the Media & Communications Committee.
Biennial Porphyrias Symposium Objectives
Every two years. APEX, together with the UPA will organize and execute the 2-3 day International Porphyrias Symposium. The Symposium will present the latest basic, translational and clinical research studies on heme biosynthesis and the eight major Porphyrias and their rare variants. The program is designed to provide a high-level introduction to each of the Porphyrias for physicians and researcher-scientists, as well as state-of-the art research studies by national and international experts. This symposium will require significant effort by committee members.
Lead: Kristen Wheeden, DrPH
The Media and Communications will manage and maintain external communications including website, email, etc.
Leads: Karl Anderson, MD (Acute) & Manisha Balwani, MD (Cutaneous)
The Publications for Diagnosis and Management Committee will work with other stakeholders to encourage development of standardized laboratory testing that should be available for diagnostic testing and monitoring of Porphyrias. These efforts will be in cooperation with Ipnet and other international interest groups. The objective will be to build consensus for making appropriate biochemical and molecular testing available to all patients and their physicians. This will include defining what is considered first-line and second-line testing.
The Committee will also work on guidelines for treatment and monitoring of Porphyrias, which will need updating based on new knowledge and introduction of new therapies.
Lead: Karl Anderson, MD
Training & Career Development Committee will sponsor and identify sources of support for educational activities for APEX members and their associates to include lectures, seminars and on-site training activities. Some of these will be in collaboration with the United Porphyrias Association, Ipnet and other organizations with shared interests and goals. In particular, it will explore continuing successful training and career development programs that were initiated by the Porphyrias Consortium.
Lead: John Phillips, PhD
The Research committee seeks to fund research related to basic translational and clinical research on heme biosynthesis and the Porphyrias. The committee will implement a research funding program that will adhere to established guidelines for distribution of funds earmarked for research. Access to funds will be to APEX Members. A research page on the APEX website will be established. Transparency is of high value so that APEX can show corporate and private investors the impact of the funds.