Extramammary Paget’s Disease (EMPD) Support Group
Welcome to our support community for those affected by extramammary Paget’s disease (EMPD). An EMPD diagnosis can feel overwhelming and isolating, which is why we offer a private online space where you can connect with others who truly understand. Started many years ago by an EMPD patient, the group has grown to include hundreds of members from more than 50 countries.
The private EMPD support group is hosted in a hidden Facebook community and is open to individuals diagnosed with EMPD, along with their caregivers and loved ones. To maintain a safe, patient-focused space, guest participation may be limited. Our goal is to provide a supportive, welcoming environment where patients can share experiences, ask questions, and receive encouragement from others who genuinely understand what they are facing.
As a participant in our international EMPD support group, you'll have access to a range of resources including:
A private discussion space to connect with others and share your EMPD experiences
Educational resources including research updates, clinical trials, diagnostic information, and treatment insights
Emotional support and practical coping strategies from people who understand the challenges of EMPD
A moderated community led by volunteers with personal experience navigating this disease
We primarily read and write English, but we are happy to translate inquiries from any language. Within the support group, Facebook can automatically translate member comments, making global participation possible.
How to Request Membership
Because the group is hidden for privacy and safety, Facebook requires us to manually invite each member. Hidden groups cannot be joined through a public button, and invitations often fail if they are sent to the wrong account. Sharing your Facebook profile link ensures we can invite the correct profile and avoid the most common joining issues.
After submitting the registration form, you’ll receive an email confirmation. Please allow a few days for a reply and check your “Promotions,” “Updates,” or spam folders if you don’t see one.
If you are not on Facebook, you may still share your EMPD diagnosis so we can include you in future research updates and opportunities.
We hope this support group becomes a source of comfort, strength, and connection as you navigate life with this rare cancer. If you have any questions, please reach out. We are here for you.