栄養・代謝障害
栄養・代謝障害に関するのホームページを紹介します
GaucherHouse(ゴーシェ ハウス)
- 先天的に酵素が欠損している稀少難病であるゴーシェ病患者の家族として情報を発信。http://homepage2.nifty.com/GaucherHouse/index.html/
Kon's Room
- ウィルソン病の闘病記。肝臓の知識、掲示板。http://www2u.biglobe.ne.jp/~doka/
MITSUKOの扉
- ウィルソン病の説明と今までの経過について掲載。スキー旅行などの写真もある。http://homepage3.nifty.com/willson/
Pick C House
- ニーマンピックC型(NPC)の娘の闘病記、疾患情報、用語解説、サポートについて掲載。http://www7.ocn.ne.jp/~k-works/pickchouse/
something about sweden
- ウィルソン病の発覚から肝生検の手術までの闘病記録とスウェーデン留学について掲載。http://homepage2.nifty.com/shino/
ウィルソン病友の会
- 患者会。活動紹介、疾患の説明と治療法などを掲載。http://www.jawd.org/
ファブリー病患者と家族の会
- 活動報告、疾患の医療情報を掲載。http://www.geocities.jp/fabry630/
マック大竹の体験談
- 高脂血症が治癒するまでの記録とマラソンや山登りなど趣味の話題。http://www013.upp.so-net.ne.jp/macotake/
全国ポルフィリン代謝障害友の会 さくらの会
- ポルフィリン症の概要、薬剤情報を掲載する患者会のサイト。http://kiyos.com/sakura/
日本ムコ多糖症親の会
- 会のあゆみ、疾患の説明などを掲載。http://www.ann.hi-ho.ne.jp/ginchann/index_mps.html
生活習慣病を甘く見ないで
- 高脂血症だった母の経過を参考に予防と対策を考察。http://medical.litminc.com/
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