Home 로그인/로그아웃 회원전용게시판 회원전용갤러리 후원자원봉사 ENGLISH  

Organization
  • Chief : Sun Tae Bae (Mother of ALD patient, ald2000@ald.or.kr)
  • Consultant physician : Dr. HC Kang (Pediatric neurologist, HIPO0207@yuhs.ac)
  • Members : 47 families
History of Korean ALD Society
1990s
  • 1993 : Foundation
  • 1993 : Bring in Lorenzo oil
  • 1997 : Communicated with H.W. Moser (KKI)
  • 1999 : First Allogenic BMT


2000s
  • 2000 : Second case of alloBMT
  • 2001 : Third case of alloBMT
  • 2001 : ALD.or.kr webpage
  • 2002 : NHI support cost of VLCFA
  • 2004 : NHI Orphan disease included X-ALD
2010s
  • 2010 : KORD & LISCC sponsor Lorenzo oil & medical expense for the poor
  • We're now fighting
  • Lorenzo oil
  • Newborn Screening for X-ALD



Education


Diet menu development for ALD/AMN


Support Lorenzo's oil from government & public foundation


Ongoing Activities

  • Support to buy Lorenzo’s oil
  • Lighten the medical expenses
  • Newborn screening of ALD
  • Provide our samples (tissue) to researcher
  • Encourage ALD research
  • Share sorrows and joys each other

Above information provided by Eul Sik Jung(nephrologist, researcher)
맨위로

ALD모임 소개 ALD 알아보기 ALD증상완화방법 의료정보게시판
ALD모임 소개 임상양상 식이요법 게시판
ALD모임 연혁 원인 물리치료 관련사이트
ALD회원가입하기 진단 약물치료 후원자원봉사
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부신백질이영양증모임 대표 배순태 전화: 02)956-5151 이메일:ald2000@ald.or.kr
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