SUPPORT ACCESS TO BITOPERTIN
For Patients with EPP & XLP
A patient-driven movement advocating for access to a treatment that could help people living with these debilitating rare diseases experience something most people take for granted:
time in the sun without pain.
Imagine living your entire life afraid of something most people never think twice about: the sun.
For those living with Erythropoietic Protoporphyria (EPP) and X-Linked Protoporphyria (XLP), sunlight isn’t warmth or joy. It’s pain- severe, burning, unrelenting pain that can begin within minutes of exposure to sunlight and last for days.
A reaction is like fire under your skin, acid in your veins, or relentless electrical like stings that don’t stop. It’s all consuming and there is very little that provides even the tiniest bit of relief.
Imagine planning your day around shadows. Imagine missing out on childhood moments—no playgrounds, no sports, no carefree afternoons outside. Imagine covering every inch of your skin just to run errands or drive to work. Imagine watching life happen through a window.
Bitopertin offers something revolutionary:
freedom to live in the light.
“Bitopertin gave me time outside I never thought I’d have.”
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Bitopertin Has Changed Our Lives
Why Bitopertin Matters
Bitopertin matters because it addresses a critical unmet need.
Bitopertin would offer a disease-modifying, more effective and accessible treatment for EPP/XLP, especially for adolescents who currently have no treatment options.
This is not just a medication - it is possibility. It is hope for a life that isn’t dictated by fear of light.
For those who have experienced bitopertin through clinical trials, the impact is life-changing:
The ability to walk outside without immediate, debilitating pain
The freedom to do daily tasks without fear
The chance to participate in life’s simplest, most meaningful moments
Mentally, it lifts the constant burden of vigilance—the exhausting need to always be “on guard.”
Emotionally, it restores a sense of normalcy, independence, and joy that many have never known.
Socially, it allows people to show up—to be present with friends, family, and the world around them.
The benefits go far beyond the physical.
Without treatment, EPP/XLP is isolating. It leads to anxiety, depression, and a profound sense of missing out on life. The inability to spontaneously step outside or enjoy a sunny day chips away at a person’s identity and well-being over time.
Bitopertin offers something revolutionary: freedom.
Freedom from pain. Freedom from fear. Freedom to live fully.
Bitopertin gives people their lives back.
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