RareDERM Forum

RareDERM Forum
June 5-6 in Milan

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Does your organization support people living with rare/uncommon skin diseases?

If so, you are invited to join us in Milan on June 5-6 for the RareDERM Forum – a special two-day event for patient leaders.

 

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 35 patient organization leaders who serving people living with rare/uncommon dermatological diseases. One delegate per Member organization.

2. Invited guests

Program

June 5

8:30-8:45

Opening RareDERM

  • What is RareDERM
  • Welcome/Thanks
  • Objectives for the forum
  • Housekeeping

8:45-9:15

Challenges for Your RareDERM organization

9:15-9:45

Understanding Burden of Rare Skin Disease

9:45-10:15

What Connects Us – Shared Issues and Shared Opportunities

10:15-10:45

Break

10:45-11:30

Role of Patient Organizations and Online Communities in Driving Change

11:30-12:15

Science of RareDERM – Basics and What’s New and Changing the Landscape

12:15-13:15

LUNCH

13:15-14:00

Data Supports Decisions that Support Patients

14:00-15:00

The Research Environment – from University Lab to Biotech to Pharma

15:00-15:30

Break

15:30-16:00

Initiating Research: Case studies

16:00-17:00

What Needs to Change to Bring Treatment to RareDERM Patients

19:30

Dinner

June 6

8:30-8:40

Opening

8:40-9:10

Eupati Toolbox

9:10-10:10

Goals and Group Needs for RareDERM Community

10:10-10:55

Advocacy – Speaking Up for Your Population

10:55-11:10

Break

11:10-12:10

RareDERM – What’s the Strategy for Change

12:10-12:30

Close 

12:30-13:30

Lunch

 14:00

Informal meeting time for disease groups

Thank you to our generous contributors:

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