ALPE FOUNDATION, 第7回 軟骨無形成症と骨系統疾患に関する世界会合に参加 /Attended 7th International Congress on Achondroplasia and Other Bone Dysplasia

ALPE FOUNDATION, 第7回 軟骨無形成症と骨系統疾患に関する世界会合に参加 /Attended 7th International Congress on Achondroplasia and Other Bone Dysplasia

スペインで軟骨無形成症をはじめとした骨系統疾患の小児患者を支援する団体「ALPE FOUNDATION」(本拠地:スペイン・アストリアス・ヒホン)が、2022年10月9日から11日、世界会合を開催しました。この会合は4年に1度開催され、世界中の骨系統疾患者に関連する団体、家族、臨床医、研究者、心理学者、弁護士、当事者、その他小人症に関心のある一般の方々を対象に行うものです。2018年の前回会合に続き、今回もGTAとして出席することができました。コロナ禍を経て、久しぶりにオンサイトでの会合に参加してまいりました。

VI International Congress on Achondroplasia, to be held on October, 12th, 13th and 14th 2018 in Gijón, Asturias, Spain, where ALPE Achondroplasia Foundation is located. This congress is organized every four years and it gathers persons from all over the world with skeletal dysplasia and dwarfism as well as families, clinicians, researchers, educators, social psychologists, lawyers and, in general, persons with an interest on dwarfism. Following on from the previous congress in 2018, we were able to participate as GTA, Japan delegation this time as well. After the covid-19 pandemic, I was able to meet onsite for the first time in a while.

日時:2022年10月9-11日 /Date: October 9-11 2022

開催地: アストリアス・ヒホン国際見本市 / LocationFIDMA, Gijón, Asturias


10/9 Sun.
9.00-10.00 開会/Opening
10.10-11.00 アジェン2030 インクルージョン&ダイバーシティ/Agenda 2030, inclusion and diversity
11.20-12.25 今日の学際的ビジョン/Multidisciplinary vision today
12.30-13.30 軟骨無形成症のさまざまな側面に関する臨床研究/Clinical studies on different aspects of achondroplasia
13.35-14.30 合意形成文書の発表/Consensus Paper Presentation
16.00-16.30 軟骨無形成症と麻酔-支障のない麻酔を考える/Achondroplasia and Anesthesia. How to design a trouble-free anesthetic?
16.35-17.35 骨延長技術-新たな挑戦へ/Lengthening technics. New challenges
17.40-18.10 軟骨低成長の最新の研究/Latest studies on hypochondroplasia

10/10 Mon.
9.30-10.30 進行中の臨床試験/Ongoing research
10.35-11.00 コラーゲン異常症関連疾患/On collagenpathy
11.25-12.30 小人症を発症する軟骨無形成症などの骨系統疾患- 診断と予防/Back in ASDD. Diagnosis and prevention
12.35-13.10 スペインの臨床試験/Clinical trials in Spain. Update
13.20-14.30 世界の団体によるネットワーキング/World organizations. Networking
16.00-17.00 ボソリチドの治療におけるヘルスケアに関わる経験/ Healthcare experience on Vosorotide administrador.
17.05-17.40 軟骨無形成症の最新の研究とセラピー/Current research and therapies on achondroplasia
19.00 – BioMarinスカラーシップの採択/BioMarin Scholarships Assignation
19.05-20.00 短編映画 『高く立っていたい』の発表、映画と芸術の歴史を通じた軟骨無形成症と他の骨系統疾患を持つ人々のビジョンを考える/Presentation of the short film Stand Tall_Discussion: Vision of people with ASDD through history of cinema and art

10/11 Tue.
09.00-09.55 軟骨無形成症と他の骨系統疾患の診断の旅 /Travel to diagnosis of ASDD
10.00-10.45 脳神経外科の主な課題/Neurosurgery main challenges
11.15-11.40 様々な骨系統疾患と麻酔/Other skeletal dysplasia and anesthesia
11.45-12.50 再建外科/Reconstructive surgery
12.55-13.15 軟骨無形成症と他の骨系統疾患のリハビリテーション-上肢と下肢Rehabilitation of ASDD. Upper and lower limbs
13.20-13.35 乳幼児のケア/Nursery care
13.40-14.00 耳鼻咽喉科のメインエリア/ENT, key area
14.05-14.30 軟骨無形成症と他の骨系統疾患の顎顔面領域の研究/Study: Maxilofacial area in ASDD
16.00-17.00 軟骨無形成症と他の骨系統疾患の臨床ケア/Adults with ASDD. Clinical care
17.05-17.35 軟骨無形成症の小児の自然歴研究に関する最新の研究/Natural history of children with achondroplasia. Current research

〈世界の団体によるネットワーキング/World organizations. Networking〉


In this session held on the second day, three problems or challenges, and the most important issues in each country’s situation were shared. In this theme, which can be received widely, from Japan, we talked about “issues in creating a society where people are properly evaluated” as a scope.

演者等のプログラムの詳細は、こちらをご参照ください(VII Congreso Internacional ALPE 2022: PROGRAM (


Besides the above programs, more than 20 workshops were held. An estimated 600 people attended the event, and presentations were made by medical professionals and researchers from Europe, the United States, and Australia, pharmaceutical companies developing new drugs, specialists in various therapies, and patient groups from around the world.
About the program and details see here(VII Congreso Internacional ALPE 2022: PROGRAM (

An online debriefing session will be held to participate in this congress. Details will be announced in the near future.



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