Patient disease advocacy organizations are united in the common goal of improving the lives of those living with the rare diseases they represent. For some in the community, the science has advanced and treatments are available. For others, a treatment is still off on the horizon. In this episode, CPN’s Jennifer Siedman talks with Leslie Urdanta, Family Support Coordinator for the National MPS Society, a community for individuals and families living with MPS and ML about how the Society supports its families through the relatively new landscape of clinical trials; managing expectations, tempering frustrations, lifting up its members during times of disappointment, celebrating with them when advancements happen and always keeping the community united.

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