https://www.patientsforbitopertin.org/action daily 0.75 2026-03-29 https://www.patientsforbitopertin.org/action/share-story monthly 0.5 2026-03-29 https://www.patientsforbitopertin.org/action/contact-congress monthly 0.5 2026-03-25 https://www.patientsforbitopertin.org/action/contact-the-fda monthly 0.5 2026-03-26 https://www.patientsforbitopertin.org/action/post-to-your-socials monthly 0.5 2026-03-29 https://www.patientsforbitopertin.org/action/sign-petition monthly 0.5 2026-03-26 https://www.patientsforbitopertin.org/action/apollostudy monthly 0.5 2026-03-25 https://www.patientsforbitopertin.org/action/category/Social monthly 0.5 https://www.patientsforbitopertin.org/patient-voices daily 0.75 2026-05-04 https://www.patientsforbitopertin.org/patient-voices/i-can-relax monthly 0.5 2026-05-04 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/5f5a6e63-a505-4cd1-8f6f-def0e19e0560/Screenshot_20260429_101501_OneDrive.jpg Patient Voices - For the first time in my life, I can relax. - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1777923401949-3VWVDJ9CPKY389W63SSB/20260122_083737_1824.jpg Patient Voices - For the first time in my life, I can relax. https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1777923384685-2MNQCGP0RBD1AUS7LIG6/IMG-20260120-WA0014_659.jpg Patient Voices - For the first time in my life, I can relax. https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1777923448664-FO615WUTHS77GJ5N50W8/20260122_144447.jpg Patient Voices - For the first time in my life, I can relax. https://www.patientsforbitopertin.org/patient-voices/not-a-want monthly 0.5 2026-05-04 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/5d67e724-3d91-4a5d-a773-073b060beffc/IMG_2049.png Patient Voices - This life-changing drug answered a prayer - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1777922815388-WQESTG3QTFM21STA2778/IMG_5369.jpg Patient Voices - This life-changing drug answered a prayer https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1777922823481-U5TK7U44W8E9KS36FYOV/IMG_5456+%281%29.jpg Patient Voices - This life-changing drug answered a prayer https://www.patientsforbitopertin.org/patient-voices/sunny-future monthly 0.5 2026-05-04 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/82e40088-d702-4a68-8114-bad50688666a/IMG_0133.png Patient Voices - For the first 50 years of my life, the sun was my enemy - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/282febb0-8136-41f8-85e4-7282d9d1dc8a/IMG_0134.png Patient Voices - For the first 50 years of my life, the sun was my enemy - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/93c2e008-c87b-4746-bb88-d4ca04fece07/IMG_0135.png Patient Voices - For the first 50 years of my life, the sun was my enemy - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/patient-voices/life-back monthly 0.5 2026-04-03 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/0fd72cd1-5b19-44cf-9d11-1e08157863a0/IMG_5486.jpeg Patient Voices - It gave me my life back. - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/b269d0e9-1f47-45ae-a46a-78f6c8cac113/IMG_4759.jpg Patient Voices - It gave me my life back. - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/patient-voices/impact-beyond-one monthly 0.5 2026-04-03 https://www.patientsforbitopertin.org/patient-voices/fun-in-the-sun monthly 0.5 2026-04-03 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/3cb91948-4e20-4d34-87c2-dd5c0af50456/IMG_0664.png Patient Voices - What a gift to give a child- to have fun in the sun! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774559153010-3FP6CNWKW3XGCSMC7BK2/IMG_0635.jpeg Patient Voices - What a gift to give a child- to have fun in the sun! https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774559180680-B3VWM1077Y3RBMHVA90I/IMG_0662.png Patient Voices - What a gift to give a child- to have fun in the sun! https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774559598646-939RR0TC1SDA8ZLYFQER/IMG_1037.jpeg Patient Voices - What a gift to give a child- to have fun in the sun! https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774559188445-G1IDMHHSAU9MNG1XEGZ0/IMG_0663.png Patient Voices - What a gift to give a child- to have fun in the sun! https://www.patientsforbitopertin.org/patient-voices/i-now-enjoy-being-an-outdoor-grandma-without-worry-of-pain monthly 0.5 2026-03-26 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774354548996-89IOJS4NI9VLE6Z7UE8G/IMG_7625.jpeg Patient Voices - I now enjoy being an outdoor grandma without worry of pain https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774354546308-IMRW5EIKDTX1AT1IGSDL/IMG_7626.jpeg Patient Voices - I now enjoy being an outdoor grandma without worry of pain https://www.patientsforbitopertin.org/patient-voices/make-sure-every-epp-child-has-a-chance-to-be-a-kid monthly 0.5 2026-03-24 https://www.patientsforbitopertin.org/patient-voices/im-now-loving-every-minute-of-my-life monthly 0.5 2026-03-24 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/43bc257a-2c4e-4b89-86a1-81849259e477/att.2KkTgM_PnSKv6qL0FgA0kzZA5mUrPRvhkfpp9B1iOkQ.jpg Patient Voices - I’m now loving every minute of my life - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/patient-voices/from-15-mins-to-8-hours-without-pain monthly 0.5 2026-03-24 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/18468e1a-369c-44f5-828a-25ce5364ea33/IMG_3438.jpeg Patient Voices - From 15 mins to 8 hours without pain - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774302808022-C1HH32F3QNKKW2UXPSY2/IMG_0936.jpeg Patient Voices - From 15 mins to 8 hours without pain https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774302831194-T8BTU4C230B4YFIC520I/IMG_4968.jpeg Patient Voices - From 15 mins to 8 hours without pain https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774302848937-UZE43RZ86MF779O27UP5/IMG_6440.jpeg Patient Voices - From 15 mins to 8 hours without pain https://www.patientsforbitopertin.org/patient-voices/gingers-story monthly 0.5 2026-03-24 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/0b859060-b99d-4eb7-bfc2-1d174b75bcb0/IMG_7618.jpeg Patient Voices - Bitopertin has changed my whole life! - Make it stand out Normal day out attire prior to Bitopertin https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774299715484-H6K3G2KTOOM18Y4IXLK2/IMG_7619.jpeg Patient Voices - Bitopertin has changed my whole life! https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774299716248-2KA3MX0ETVJUBBN6QSN3/IMG_7620.jpeg Patient Voices - Bitopertin has changed my whole life! https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774299717287-IR0Y3PH28MF0DL04JDHK/IMG_7621.jpeg Patient Voices - Bitopertin has changed my whole life! https://www.patientsforbitopertin.org/patient-voices/make-reality monthly 0.5 2026-04-03 https://www.patientsforbitopertin.org/media daily 0.75 2026-04-06 https://www.patientsforbitopertin.org/media/pn03-03 monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774468365705-H11180RIZ9WUFT67N9LP/Screenshot+2026-03-25+135217.png Media Stories - Disappointed by the FDA’s ruling on an investigational EPP treatment - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/media/boston25-26-02 monthly 0.5 2026-03-25 https://www.patientsforbitopertin.org/media/fda26-02 monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/47db6b9d-2df2-4416-a77c-6226d66947d9/FDA.png Media Stories - FDA Launches Framework for Accelerating Development of Individualized Therapies for Ultra-Rare Diseases - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/media/bioworld26-02 monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/4eaa6be4-72f0-4fbe-8591-7d745c6d4b8b/BioWorld.png Media Stories - Delay for Disc as CNPV-designated bitopertin earns CRL in EPP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/media/fierce26-02 monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/3f4c7e8d-e6d2-4702-85ab-ebc8f8b53e91/Fierce.png Media Stories - FDA rejects Disc’s rare disease drug despite Commissioner’s voucher - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/media/reuters26-02-13 monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/3abe2c56-2cc3-4e9c-9f85-50c425ba5b32/Reuters.png Media Stories - US FDA declines to approve Disc Medicine’s rare disease drug - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/media/people26-02 monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/6a793383-da78-49b5-83e9-60fe378f95fa/Craig+in+People.png Media Stories - He Grew Up Allergic to Sunlight. Now He Makes Wishes Come True for Kids with the Same Painful Condition - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/media/fda26-02-02 monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/1774476324077-0F6KTXG4070YL5MYV84V/FDA2.png Media Stories - FDA Rare Disease Innovation Hub Strategic Agenda - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/media/globe25-12 monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/68890068-ccde-4228-a319-7bd2112ee9f7/Globe.png Media Stories - A new drug has allowed two women to go in the sun for the first time in years - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/media/abcsd25-10 monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/ad581297-db1e-482d-8443-97e788935c82/ABC.png Media Stories - USD student diagnosed with rare sun disorder inspired to pursue biochemistry career - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/media/fda25-09 monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/723f8301-f791-4e1d-861d-ad1e1a3c7562/FDA3.png Media Stories - FDA Advances Rare Disease Drug Development with New Evidence Principles - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientsforbitopertin.org/media/category/ADVOCACY monthly 0.5 https://www.patientsforbitopertin.org/home daily 1.0 2026-03-26 https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/65ce6477-d909-4701-a126-3ac5b26aa29c/BfP+Banner+%282%29.png https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/65ce6477-d909-4701-a126-3ac5b26aa29c/BfP+Banner+%282%29.png https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/65ce6477-d909-4701-a126-3ac5b26aa29c/BfP+Banner+%282%29.png https://images.squarespace-cdn.com/content/v1/69bc6f61b7607f24fa7846f4/65ce6477-d909-4701-a126-3ac5b26aa29c/BfP+Banner+%282%29.png https://www.patientsforbitopertin.org/contact-us daily 0.75 2026-03-26 https://www.patientsforbitopertin.org/the-situation daily 0.75 2026-03-26 https://www.patientsforbitopertin.org/media-inquires daily 0.75 2026-03-25