Spela Mirosevic
@MirosevicSpela
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Mother. Wife. Researcher. On a mission to develop gene therapy for this sweet little person. #CTNNB1 Syndrome
Joined March 2021
I urge Horizon to do the right thing and provide access to life changing medication for SLC6A1 patients!!! https://t.co/rANqbNHqVH via @statnews
@SLC6A1_Mom @Maxs_Milestones @HorizonNews @HorizonCEOTW @RareDiseases @GlobalGenes
statnews.com
Ravicti was already FDA-approved, so a doctor might be able to prescribe it right away for a rare form of epilepsy. But at around $740,000 per year, it is one of the most expensive drugs in the world.
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Our family is on a mission to develop gene therapy for our son and every other child with CTNNB1 Syndrome. PLEASE share this link. Thank you! New Hope for Children with CTNNB1 Syndrome
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