Date: 06/03/2020

FIRST unequivocally stands in solidarity with those protesting the murders of George Floyd, Ahmaud Arbery, Tony McDade, Breonna Taylor, Eric Garner, Trayvon Martin, Tamir Rice and the many others who have lost their life to racist violence.  Black lives matter.

We stand with you against hatred, police violence, and racism in all its forms.  We strongly believe in empathy, inclusion and justice.

Although as an organization we've endeavored to be sensitive to issues of discrimination, to advocate for members across the globe and improve lives, recent events have helped us to become more keenly aware of the importance of looking inward at our own practices related to inclusion and diversity.  We know we can do better to be the organization all want and need us to be.

We also know many members hoped to hear our voice sooner - and rightfully so.  FIRST apologizes deeply for any hurt caused by the timing of this message.

The FIRST staff, Board of Directors and Medical and Scientific Advisory Board are working together to ensure an organization that stands shoulder to shoulder with and supports and advocates for those that are marginalized, dismissed, bullied, discriminated against or senselessly harmed because of their skin.

Below we have listed some resources to help people get involved in the fight against racism.  Moving forward, on our website and at our events, we are committed to highlighting more Black stories.  We will also be quieting down in order to listen to and learn from Black voices everywhere.

If you would like to share feedback, offer suggestions for ways we can improve, or send along additional links we can share, we welcome emails sent to

MSAB Statement:

The FIRST Medical and Scientific Advisory Board recognizes that many people living with ichthyosis regularly experience discrimination related to their skin condition.  For our members with skin of color, this discrimination is amplified.  In the wake of recent tragic events, we stand in solidarity with all of our members and their families who have been judged, treated unfairly, or otherwise harmed because of the color of their skin.  We are deeply committed to inclusivity and equality of care and pledge to act on these values.  We want you to know that we see you, we hear you, we stand with you, and we hope to actively learn how we can do better for you. 


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