Season 4, Episode 7: Hunter Syndrome & Rare Disease Allyship - Kyle Underwood and Adam Haas
Meet Kyle Underwood -- a fierce advocate and loyal friend who navigates life with MPS II, also known as Hunter Syndrome, a rare genetic disorder. It is characterized by the abnormal accumulation of complex sugars in cells, impacting multiple bodily systems primarily affecting boys.
Kyle's resilience and strength shine through, teaching us invaluable lessons beyond any label.
In this incredible roundtable, join me, Kyle, and his best friend, Adam Haas, as they share their candid insights into the world of rare diseases, Kyle's journey, and the transformative power of allyship.
Together, Kyle and Adam are on a mission to raise awareness and support within the rare disease community. Their unwavering friendship is a powerful testament to the bonds of unconditional support and authenticity. Through their shared experiences, Kyle and Adam inspire us all with their genuine friendship and commitment to uplifting each other's true selves.
May 15 is MPS II Day, a dedicated occasion to raise awareness and support for individuals living with Hunter syndrome, highlighting their journeys and advocating for improved care and research.
Resources for MPS II / Hunter Syndrome:
Everylife Foundation for Rare Diseases
NORD - National Organization for Rare Diseases
Project Alive
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Informationen
- Sendung
- HäufigkeitMonatlich
- Veröffentlicht15. Mai 2024 um 22:00 UTC
- Länge46 Min.
- Staffel4
- Folge7
- BewertungUnbedenklich