TIARA
Forum Replies Created
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TIARA
MemberDecember 23, 2025 at 9:05 pm in reply to: Urgent: SMA Type 1 infant – Zolgensma access blocked due to costHi Alyssa,
Thank you so much for taking the time to respond and for sharing this information. I truly appreciate it.
I will definitely reach out to the Boston Children’s Hospital SMA Program to see if they may be able to guide us regarding international patients or possible pathways for treatment.
Thank you again for your kindness and support.
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TIARA
MemberDecember 23, 2025 at 9:00 pm in reply to: Urgent – Infant with SMA Type 1, treatment access blocked due to costHi Kevin,
Thank you very much for your response and for taking the time to guide me.
I have already reached out to Cure SMA and received an initial response. I am continuing to follow up with them and hoping they may be able to guide us further or connect us with additional resources.
I truly appreciate your support and recommendation. Thank you again.
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TIARA
MemberDecember 22, 2025 at 9:37 pm in reply to: Urgent: SMA Type 1 infant – Zolgensma access blocked due to costHello everyone,
Just following up in case anyone has experience with early or managed access programs for SMA Type 1, or international pathways for Zolgensma.
Any guidance or even a small direction would mean a lot to our family.
Thank you again for your time.