RareDERM Forum

Date: June 5-6, 2019

Location: Hilton Garden Inn Milan Malpensa in Milan, Italy


Day and a half event that will bring together patient leaders from around the world who serve people living with rare/uncommon and neglected dermatological diseases. These organizations provide essential services, support and access to information; opportunities to link with other patients; connection to researchers; and speak up for access to care and treatment.

Forum Objective:

Build a cohesive community of rare dermatology disease patient organizations and supporting stakeholders to ensure the lives of these patients are positively impacted in a measurable way by:

1. Developing a global RareDERM network three-year strategy

2. Building capacity among patient leaders

3. Creating linkages between patient leaders and other key stakeholders around the world.


1. Approximately 60 patient organization leaders who serving people living with rare/uncommon and neglected dermatological diseases

2. Invited guests


June 5, afternoon: Presentations

  • Scientific
  • Patient Organization experiences

June 5, evening: Networking Dinner with Keynote Speaker

June 6, morning: Needs Analysis

June 6, afternoon: Strategic Planning (Facilitated)