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

DC Leukodystrophy Research Trip Update(UBTF)

29 min · 27. juni 2024
episode DC Leukodystrophy Research Trip Update(UBTF) cover

Description

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 [https://acast.com/privacy] for more information.

Comments

0

Be the first to comment

Sign up now and become a member of the Double Rare: A Mother's Path With Two Rare Diseases community!

Get Started

1 month for 9 kr.

Then 99 kr. / month · Cancel anytime.

  • Podcasts kun på Podimo
  • 20 lydbogstimer pr. måned
  • Gratis podcasts

All episodes

11 episodes

episode DC Leukodystrophy Research Trip Update(UBTF) artwork

DC Leukodystrophy Research Trip Update(UBTF)

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 [https://acast.com/privacy] for more information.

27. juni 202429 min