Extramammary Paget’s Disease (EMPD) Resources

 

EMPD Resources Overview

Welcome to our dedicated resources page for extramammary Paget’s disease (EMPD). We are here to increase EMPD awareness and provide a thoughtfully designed website tailored to meet your specific needs. While this page highlights EMPD resources, the overall website includes hundreds of helpful pages. Just use the menu to browse the varied topics. Whether you're grappling with the shock of a recent EMPD diagnosis, courageously navigating through treatment options, or extending steadfast support to a cherished family member or friend battling EMPD, our aim is to provide you with invaluable EMPD resources.

EMPD Support Group

For individuals and families navigating the challenges of extramammary Paget's disease (EMPD), finding a supportive community can make a significant difference. That's why we offer a dedicated EMPD support group tailored specifically to those affected by EMPD. Within this group, you'll find a compassionate network of EMPD patients and family members who understand the unique experiences and concerns associated with this condition. Whether you're seeking emotional support, practical advice, or simply a listening ear, our support group provides a safe and welcoming space for you to connect with others who share similar journeys. Access additional information and learn how to connect with our support group here.

EMPD Doctors

Finding a doctor well-versed in extramammary Paget's disease (EMPD), with substantial experience in treating EMPD patients, can indeed be a challenging task. Over time, many EMPD patients have generously shared their experiences in navigating the healthcare landscape, resulting in the development of a list of doctors adept at diagnosing and treating EMPD. It's important to note that while compiling this list, inclusion does not equate to endorsement; rather, it serves as a valuable starting point for individuals who may be uncertain about where to initiate their search for competent EMPD care.

Despite a lengthly list of EMPD doctors, some EMPD patients in the United States inquire about the most frequented practitioners for EMPD treatment. Notable names include:

  • Dr. Anthony M. Rossi, MD, a Dermatologist, Mohs, & Laser Surgeon at Memorial Sloan Kettering Cancer Center (MSKCC) in New York, NY who treats men and women.

  • Dr. Jamie N. Bakkum-Gamez, MD, a Gynecologic Oncologist at the Mayo Clinic in Rochester, MN specializes in the surgical care of women with gynecologic cancers, including EMPD.

These esteemed professionals, along with their dedicated colleagues, boast significant expertise in treating EMPD, having attended to hundreds EMPD patients throughout their careers. In addition to their specialized focus on EMPD treatments, both Dr. Rossi and Dr. Bakkum-Gamez collaborate with a diverse network of colleagues who also possess extensive experience in managing varied types of EMPD.

Given the rarity of EMPD and the absence of clear diagnostic or standardized treatment protocols, many patients recommend seeking care at medical institutions specializing in cancer research and treatment. These include both dedicated cancer facilities as well as many university medical centers. Nonetheless, some EMPD patients mention they have found adequate EMPD care locally. Additionally, some patients advocate for a multidisciplinary approach to EMPD treatment.

Regardless of where an EMPD patient might live, it's prudent for EMPD patients to seek out doctors with a proven track record of successfully managing multiple EMPD cases. This suggestion, based on collective patient insights, doesn't endorse specific physicians, treatments, or facilities. However, it underscores the importance of seeking personalized care tailored to individual circumstances. Each EMPD patient should actively pursue the most suitable treatment, prioritizing their unique needs and preferences to ensure comprehensive and effective care.

EMPD Research Studies

Among explanations of extramammary Paget's disease (EMPD), some of the most comprehensive insights stem from EMPD research studies and articles dedicated to the subject. However, it's essential to discern the quality of such studies, as not all are equally rigorous. While certain studies may be based on limited data from a few EMPD cases or authored by individuals with limited experience in managing such cases, the most reliable information often arises from collaborative efforts involving multiple authors across varied institutions. A few highlighted EMPD articles/studies can be found here. Additionally, a comprehensive database housing a diverse range of EMPD studies is available for further exploration here or an EMPD study search here. (Please exercise caution, as the content within these resources may include images or material that could be unsettling to certain readers.)

EMPD Clinical Trials

Clinical studies focusing on patients with extramammary Paget's disease (EMPD) exhibit significant variability across different countries. Within the United States, the ClinicalTrials.gov website stands out as a comprehensive resource for accessing a wide array of EMPD studies. However, it's important to note that the landscape of EMPD studies is dynamic, with studies periodically commencing and concluding, leading to periods where no ongoing studies are listed. Furthermore, it's noteworthy that the majority of EMPD studies in the United States are predominantly oriented towards women, reflecting the higher incidence of EMPD cases among women in this region. For additional insights into ongoing clinical studies, interested individuals can explore further information here.

Helpful Cancer Links

Some of the most valuable online resources for extramammary Paget's Disease (EMPD) include:

  • PubMed: PubMed offers access to a vast database of medical research articles, including studies related to EMPD. It can be a valuable resource for those seeking in-depth information and the latest advancements in EMPD research.

  • Rare Diseases Clinical Research Network (RDCRN): RDCRN offers resources and information on rare diseases, including EMPD. It provides information on research studies, patient registries, and support organizations.

  • National Organization for Rare Disorders (NORD): NORD offers resources and support for individuals affected by rare diseases, including EMPD. Visitors can find information on advocacy, research, and patient assistance programs.

  • Cleveland Clinic: Offering a reliable overview of Extramammary Paget's Disease (EMPD), the Cleveland Clinic website serves as a trusted source for understanding this condition.

  • The Skin Cancer Foundation: This foundation not only emphasizes the importance of skin cancer prevention and early detection but also provides information and resources about rare skin cancers like EMPD.

  • Global Genes: Dedicated to supporting individuals and families affected by rare diseases worldwide, Global Genes offers valuable resources and advocacy for EMPD patients.

  • DermNet: Known for its extensive dermatology resources, DermNet provides detailed information on various skin conditions, diagnostic procedures, and treatment options for EMPD.

  • American Society of Clinical Oncology (ASCO): ASCO offers resources and information on cancer care, including EMPD. Visitors can access patient education materials, and clinical guidelines.

These websites collectively offer a wide range of information for individuals affected by extramammary Paget's disease (EMPD), catering to the needs of patients, caregivers, and healthcare professionals. As the information contains links to external sources, myEMPD.com does not exert any control over the content displayed on those sites.

This information was written by EMPD patients and family members and is believed to be accurate at the time of publication. The content presented on this website, encompassing both textual material and visual media, serves educational and informational purposes aimed at aiding individuals affected by extramammary Paget’s disease (EMPD) and their families in comprehending the complexities associated with EMPD. It is imperative to note that the website is not designed to serve as a replacement for professional medical advice, diagnosis, or treatment. Furthermore, the website does not advocate for or endorse any specific treatments, tests, physicians, procedures, or products. Should you suspect that you are experiencing symptoms of EMPD, we strongly advise you to seek guidance from your healthcare provider.

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