Panel One: Patients

5:00pm EST

(50 Min)

Patients:
Cheryl Bradford
Jessica Reid
Brandi Cleaver
Moderator
Louise Perkins
  • Patients address the diverse challenges of Sarcoidosis.

  • How issues of diversity and inclusion inside health systems and research continue to be barriers for people with rare disease (Sarcoidosis)- pain, socioeconomic 

  • How rare disease influences marginalization

  • Unclear endpoints (I don’t actually feel fine- even if endpoints say they are fine)

  • Pathway- Disease is not linear

  • Symptom alleviation/ very individualized

  • Treat the patient and not the symptoms

  • Multi factorial diagnosis/Multiple organ manifestations

  • One organ may flare

  • Immunological (flare)

  • Can be fine for along time, then flare at any time.

  • Eligibility for trial (one organ flares) 

Panel Two: Experts/Leaders

6:00pmEST

(50 Min)

Experts/Leaders:

Ann Marie Montijo

Ogugua Ndili Obi, MD, MPH, MSc

Nadera Sweiss, MD

Moderator

Craig Lipset

  • Experts/Leaders (Sarcoidosis specialist, mental health specialist,  sarcoidosis researcher)

  • Respond to these diverse challenges and what they are doing in their own work to address them.

  • Impacting care

  • Impacting Diagnosis​

Panel Three: Organizations

7:00pm EST

(50Min)

Organizations

Foundation for Sarcoidosis Research – Mary McGowan
Stronger Than Sarcoidosis – Frank Rivera 
Global Genes –Anne Wolf

Moderator-

Lilly Stairs

  • Organizations respond to these challenges and provide insight into how, at an organizational level, they can be addressed.

 

  • Raise additional needs/concerns related to diversity as well.

 

  • What are these organizations doing?

 

  • What kinds of changes/ support do we need?