Contact your Legislators
Legislators routinely contact the FDA on behalf of rare‑disease communities. Your call or email can make a real difference.
Members of Congress cannot directly approve a drug, but they can contact the FDA, ask questions, request updates, and push for accountability. When enough patients, families, and supporters speak up together, it becomes much harder to ignore the community’s needs.
How to Contact Your Members of Congress
You should contact your U.S. House Representative and your two U.S. Senators
Use the links below and your state/zip code to find your senators and house representatives:
Contact them by any of the options below (or all):
Email a letter through their website
Submit a formal “help with federal agency” request
Schedule a meeting (virtual or in-person)
Call their office
What to say
Do not say, “Please approve bitopertin.”
Make your message personal and use these KEY POINTS:
You are a constituent (who they represent)
You have a rare disease (EPP/XLP)
Bitopertin is safe, clinically tested, and life-changing
The FDA decision is impacting your ability or a loved one’s ability to live a normal life
You’re asking them to advocate to the FDA, request reconsideration, and support rare disease patients
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COPY, PASTE & PERSONALIZE
Make it personal to your story.Dear [Senator/Representative Name],
My name is [Your Name], and I am a constituent living in [City, State] and part of the EPP/XLP community.
I am reaching out to you as someone living with a rare disease called erythropoietic protoporphyria (EPP), a rare and debilitating condition that causes severe pain from sunlight exposure. Even a few minutes in the sun can result in intense, burning pain that is not visible but deeply life-limiting. Everyday activities like walking outside, driving, or even attending family events can be extremely difficult or impossible.
I am writing to ask for your help in advocating for patients like me who are in urgent need of access to a treatment called bitopertin.
Through clinical research, bitopertin has been clinically studied and shown meaningful benefit for patients with EPP. For those who have had access, it has provided something we have never had before — the ability to safely live more normal, independent lives.
Despite this, access to this treatment remains uncertain, and patients are facing the possibility of losing a therapy that significantly improves quality of life.
I respectfully ask that you contact the US Food and Drug Administration to:
Request additional transparency around the review process for Bitopertin
Encourage the agency to act with the urgency and flexibility intended for rare‑disease populations
Ensure that patient experiences are meaningfully considered in decision-making
As your constituent, your support would mean a great deal to me and others in the rare disease community who are fighting for the chance to live without constant fear of pain from something as simple as sunlight.
Please stand with our community — we need your help now.
Sincerely,
[Your Name]
[Your Address]
[Your Email / Phone Number]
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Hello, my name is (your name) and I’m a constituent from (City, State).
I’m calling because I or someone I love lives with EPP/XLP, a rare disease that causes severe pain from sunlight exposure. Even a few minutes in the sun can be deeply painful and life-limiting.I’m asking [Senator/Representative Name] to support patients seeking access to bitopertin and to urge the FDA to act with urgency, transparency, and flexibility for this rare disease community.
Bitopertin has shown meaningful benefit for people with EPP/XLP, and patients cannot afford to keep waiting.
Thank you for your time and for supporting rare disease patients.
Gain momentum!
Encourage your family, friends, and other patients to send messages too. There is strength in numbers and volume matters here.