Post to Your Socials
Find PATIENTS FOR BITOPERTIN on Facebook, Instagram, and LinkedIn!
Use your voice on social media by sharing content from Patients for Bitopertin or creating your own post and tagging @Patients for Bitopertin. Every post helps build awareness, visibility, and urgency.
Whether you are living with EPP or XLP, caring for someone who is, participating in a clinical trial, or standing with the community, your voice matters.
Create Your Post
You do not need to write something long. A few honest lines and a meaningful photo can go a long way.
When you post, consider including:
a photo of yourself, your family, or an everyday moment affected by EPP or XLP
your personal experience living with EPP or XLP - what does a reaction feel like?
your experience on bitopertin
what access to bitopertin could mean for your life
why patients cannot afford to wait
a request for others to share, repost, and follow Patients for Bitopertin
For more writing suggestions and prompts, check out Share Your Story.
Use Hastags
#Patientsforbitopertin #lifewithepp #FDAapprovebitopertin #FDADoRightByRare #BitopertinSetMeFree #BitopertinWorks
Tag
@Patientsforbitopertin @drmakaryfda @fda
Sample Posts
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Please personalize
I have EPP. Before bitopertin, I had about 2 minutes in the sun before it felt like I was being burned alive. Now I have hours!
More time in the sun may sound simple to other people, but to me it is meaningful. It means being able to do more, join more, and live more freely. Bitopertin works.
I’m sharing in support of @PatientsforBitopertin because people living with EPP cannot afford to wait.
#Patientsforbitopertin #lifewithepp #FDAapprovebitopertin #FDADoRightByRare #BitopertinSetMeFree #BitopertinWorks
@drmakaryfda @fda
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I have EPP, and before bitopertin I had about 2 minutes in the sun before it felt like I was being burned alive. Now I have hours.
That may sound small to some people, but to me it is everything. More time in the sun means more life, more spontaneity, and more chances to be part of the world instead of watching from the sidelines.
Bitopertin works.
I’m posting for Patients for Bitopertin because people living with EPP should not have to wait longer for access to something this meaningful.
#Patientsforbitopertin #lifewithepp #FDAapprovebitopertin #FDADoRightByRare #BitopertinSetMeFree #BitopertinWorks
@drmakaryfda @fda
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I live with EPP, a rare disease that can make time in the sun incredibly painful. Before bitopertin, I had about 2 minutes in the sun before feeling like I was being burned alive. Now I have hours.
That change is not small. More time in the sun is meaningful to me because it means more life, more possibility, and less time spent on the sidelines.
I am sharing this in support of @PatientsforBitopertin, a patient-led effort advocating for access to a treatment that is making a real difference. Bitopertin works.
Please help raise awareness by sharing, reposting, or creating your own post and tagging Patients for Bitopertin.
#Patientsforbitopertin #lifewithepp #FDAapprovebitopertin #FDADoRightByRare #BitopertinSetMeFree #BitopertinWorks
@fda @fda-commissioner-martin-makary