DC Leukodystrophy Research Trip Update(UBTF) episode artwork

EPISODE · Jun 27, 2024 · 29 MIN

DC Leukodystrophy Research Trip Update(UBTF)

from Double Rare: A Mother's Path With Two Rare Diseases

During our trip to Washington, DC for medical research related to my son's Leukodystrophy gene mutation (UBTF), we stayed at the Ronald McDonald House for accommodations. In addition to focusing on medical appointments and research, we took the opportunity to visit family members, including his grandparents (nono and yaya) and aunt. We also enjoyed attending a lively Greek festival together, immersing ourselves in the cultural experience. The trip was rounded off with a pleasant brunch shared with our relatives, combining both the pursuit of medical insights and cherished family moments in our nation's capital. Hosted on Acast. See acast.com/privacy for more information.

Episode metadata supplied by the publisher feed · Published Jun 27, 2024

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