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Name

Seamus Conlan

Gender

Male

Location

Dublin, Ireland

Relationship

Family

Short Bio

My son Zack Anthony Conlan was diagnosed with CF in March 2018. He has a gating gene alteration called R117H 5T. There is a CF modulator drug called Kalydeco which is a game changer for my son’s condition but he is denied access to this by the European Medicines Agency until he is 18 years old. This drug is available to children in the US and Australia from age 6 months and above. I need to do whatever is necessary to get the EMA to align with the US and Australia  and make this drug available to children in Europe with the R117H 5T gene alteration at 6 months. The EMA currently deny children with R117H access to the drug Kalydeco that will add decades to their lives if  prescribed at infancy. Kalydeco has been available for infants in the US since 2015 and the benefits to kids with the R117H 5T gene alteration are held in the databases is US hospitals. The European Medicines Agency are not proactive and do not source/analyse this data that proves the effectiveness of Kalydeco for children with the R117H 5T gene alteration.

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CF Website

How long have you or the person that you are caring for had CF?

16 months

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