One of the newest alliance affiliates is aHUS Kids Japan although it hard to believe that it was formed over two years ago now.
Since its first meeting the group holds an annual gathering of patients, families and clinicians.
Its 2018 meeting was held in October and here is a short synopsis of what happened , including the results of some group artwork produced by the children during the day.
Our meeting was held on October 14th.
Four families gathered at the meeting.
Children drew pictures and put paper butterflies to where they liked, and finally big artwork was completed.
There were two lectures for parents.
First, Dr. Ito talked about Meningococcal infection.
What the infection is like, and what is important to prevent it and to notice the symptoms of it.
Second, Dr. Yaeko Motoyoshi talked about candidate for next treatment of aHUS.
Clinical trial for long acting antibody to complement factor 5 is in progress.
There were many questions from the members.
After the lecture, all members enjoyed tea, snack and many talk.
We had pleasant time and felt glad, because health condition of all the children was well and could see their growth.
Next meeting will be held next year
The artwork produced during the day featuring the butterfly which is a part of the patient organisation’s logo.
The same account but in Japanese.
aHUS Kids Japan交流会は10月14日に開催されました。
aHUS Kids Japan設立前の交流会も合わせると、今回は8回目の交流会と
今回は4家族が集まりました。
子供たちは大きな布に絵を描いたり色紙で作ったチョウチョを貼っ
大人向けには２つのレクチャーがありました。
1つ目は伊藤医師による髄膜炎菌感染症のお話しでした。
どんな感染症なのか、
2つ目は元吉医師による今後の治療薬についてのお話しでした。
長期間作用する抗C5抗体の治験の進行状況や、
レクチャーの後はみんなでお茶とお菓子を食べながらおしゃべりを
次の交流会は、また来年開催の予定です。
The fun part of the day continues as some delegates dress up with a halloween theme
Dr Yeako ( centre of the three in photo) , an important supporter of the organisation, hopes this report will help many people to know aHUS Kids Japan.
It does and many can identify with the family members “asking questions “and “talking”, and happy to see their children flourish.
It is a small world.
