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Urgent – Infant with SMA Type 1, treatment access blocked due to cost
Hello everyone,
I am a father from Iran and the caregiver of my baby girl diagnosed with SMA Type 1.
Her medical case is registered at multiple hospitals (including Jalila Children’s Hospital in Dubai and Sidra Medicine), but she has not been accepted for life-saving treatment due to the extremely high cost.
We are facing a situation where access to treatment depends entirely on financial ability, which is beyond our capacity.
We are urgently seeking guidance from other parents or caregivers who have experience with:
• early access or compassionate use programs
• international treatment pathways
• advocacy or nonprofit support
Any advice, experience, or direction would mean everything to our family.
Thank you for taking the time to read this.
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2 Replies
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Hello! I would recommend reaching out to Cure SMA. They are the largest SMA advocacy organization. curesma.org
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Hi 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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