Hi
I am Kheng Hui from singapore and i have checked with the doctors here that they dont have experience to perform HSCT. I would like to have the list of doctors who have experience doing this for childhood x-ald. Currently my child is 6 years old and i am racing against time.
KhengHui
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My son goes to Minneapolis, MN. The hospital is Amplanz childrens hospital. The Dr there is very experienced with ALD.
Please contact the doctors at University of Minnesota:
Paul Orchard MD
Orcha001@umn.edu
Gerry Raymond MD
Gvraymon@umn.edu
Duke University
Joanne Kurtzberg MD
Joanne.kurtzberg@duke.edu
Or if your son is eligible for the gene therapy clinical trial being conducted by Bluebird Bio
(Your son needs to have a Loes score of less than 10)
Contact: tomeara@bluebirdbio.com
Tara O'Meara
Sorry for the late reply as I manage to find a hospital in Singapore who have experience doing such transplant . My boy received his stem cell transplant where his daddy is the donor. We went ahead with it although he is in advance stage with Lores score of 13. We are praying for a miracle that all went well and that it will be a success story to encourage parents with child with advanced ALD.
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Do you want to get in touch with someone with a similar experience of ALD or AMN?
drugs for 8 years old boy suffering ALD