RareDERM Forum

Date: June 5-6, 2019

Location: Hilton Garden Inn Milan Malpensa in Milan, Italy

Overview:

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.

Attendees:

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

2. Invited guests

Program:

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)