Media

Media Inquiries

We welcome media interest in this effort and in the stories of people living with EPP and XLP.

Patients for Bitopertin can help connect members of the media with patients, caregivers, and families willing to share their experiences living with these painful, life-limiting rare diseases, as well as the impact bitopertin has had for those who have received it.

If you are a member of the media and are interested in covering this story, featuring a patient voice, or learning more about the urgency facing this community, please contact us.

In the Media

Explore recent media coverage, interviews, and stories related to EPP, XLP, bitopertin, and the FDA announcements regarding rare disease therapies.

Media Stories
Disappointed by the FDA’s ruling on an investigational EPP treatment
Disappointed by the FDA’s ruling on an investigational EPP treatment
Two local women share life with rare sun condition, urge continued drug development
Two local women share life with rare sun condition, urge continued drug development
FDA Launches Framework for Accelerating Development of Individualized Therapies for Ultra-Rare Diseases
FDA Launches Framework for Accelerating Development of Individualized Therapies for Ultra-Rare Diseases
Delay for Disc as CNPV-designated bitopertin earns CRL in EPP
Delay for Disc as CNPV-designated bitopertin earns CRL in EPP
FDA rejects Disc’s rare disease drug despite Commissioner’s voucher
FDA rejects Disc’s rare disease drug despite Commissioner’s voucher
US FDA declines to approve Disc Medicine’s rare disease drug
US FDA declines to approve Disc Medicine’s rare disease drug
He Grew Up Allergic to Sunlight. Now He Makes Wishes Come True for Kids with the Same Painful Condition
He Grew Up Allergic to Sunlight. Now He Makes Wishes Come True for Kids with the Same Painful Condition
FDA Rare Disease Innovation Hub Strategic Agenda
FDA Rare Disease Innovation Hub Strategic Agenda
A new drug has allowed two women to go in the sun for the first time in years
A new drug has allowed two women to go in the sun for the first time in years
USD student diagnosed with rare sun disorder inspired to pursue biochemistry career
USD student diagnosed with rare sun disorder inspired to pursue biochemistry career
FDA Advances Rare Disease Drug Development with New Evidence Principles
FDA Advances Rare Disease Drug Development with New Evidence Principles
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View All Stories