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2019 TSCi 國際研討會&工作坊之回饋
2019 TSCi 國際研討會&TSC工作坊已於近日圓滿落幕。

今年的大會亦有一些進階的醫療資訊及照料白皮書,以下的連結請大家瀏覽跟進。我們也會同步放在官網上。
https://drive.google.com/drive/folders/1k2O9QS3M2Nuu7EKyJmG1mSemDcDWpClf

現在藉此平台將美國TSA的來信公布給所有台灣的TSC家庭了解,同時也感謝理事長的翻譯。

原文無下:

TSCi Workshop Notes and Follow Up Information / Katie Smith 
TSCi研討會筆記和跟進信息 / 凱蒂‧史密斯 2019/06/28的來信


Dear all, 親愛的大家,

Thank you for those who participated in last week's TSCi Workshop! We were delighted to meet with everyone! There were 25 associations and 37 individuals in attendance. If you were unable to attend this year's workshop and have any questions about the information provided, please let us know. 
感謝參加上週TSCi研討會的人們! 我們很高興與大家見面! 共有25個協會和37人參加。 如果您無法參加今年的研討會,並對所提供的信息有任何疑問,請告訴我們。

We wanted to share the following resources with you, that were mentioned during the meeting:
我們希望與您分享以下資源,這些資源在會議期間提到:

On the 2012 TSC Clinical Consensus Guidelines and TSCi Improving Care White Paper
關於2012年TSC臨床共識指南和TSCi改善護理白皮書
‧ The Clinical Consensus Conference Chairs met in 2018 to review and update the guidelines. Revisions to the guidelines will likely be completed at the end of summer 2019. Our goal is for the TSCi Improving Care White paper to be published along with the guidelines as a patient organization commentary. We will keep you updated when we know more.
臨床共識會議主席於2018年召開會議,審查並更新指南。 指南的修訂可能會在2019年夏季結束時完成。我們的目標是將TSCiImproving Care白皮書與指南一起作為患者組織評論發布。 當我們了解更多信息時,我們會及時通知您。
‧ The guidelines in English are available here - http://www.tsalliance.org/consensus.
英文指南可在此處獲取 ( http://www.tsalliance.org/consensus )

On infantile spasms 
關於嬰兒痙攣症
‧information on Infantile Spasms Awareness week (1-7 December) and ISAN (Infantile Spasms Action Network) - Child Neurology Foundation
關於嬰兒痙攣意識週 (12月1日至7日)和ISAN(嬰兒痙攣行動網絡)- 兒童神經病學基金會的信息 ( www.childneurologyfoundation.org/programs/infantilespasms/ )
‧the information film they made about infantile spasms
他們製作的有關嬰兒痙攣的資料影片

On TAND 
在TAND (TSC相關神經精神疾病)上
‧ For information on the TAND checklist translations, please email Max de Vries at tandchecklist@gmail.com
有關TAND檢核單翻譯的信息,請發送電子郵件至tandchecklist@gmail.com與Max de Vries聯繫
‧ article on TAND TSC-associated neuropsychiatric disorders (TAND): findings from the TOSCA natural history study
關於TAND TSC相關神經精神疾病(TAND)的文章:TOSCA自然史研究的結果 ( https://ojrd.biomedcentral.com/articles/10.1186/s13023-018-0901-8 )
‧ please find an English pdf of the Dutch brochure on TSC and behaviour in attachment
請查閱附件中英文pdf版關於 TSC以及行為 的文宣手冊
 
On management of TSC in a TSC Clinics  
關於TSC診所TSC的管理
‧ A step-wise approach for establishing a multidisciplinary team for the management of tuberous sclerosis complex: a Delphi consensus report
建立多學科團隊管理結節性硬化綜合症的逐步方法:德爾福共識報告 ( https://link.springer.com/content/pdf/10.1186/s13023-019-1072-y.pdf )

On early diagnosis for TSC 
關於TSC的早期診斷
‧ Early diagnosis of tuberous sclerosis complex: a race against time. How to make the diagnosis before seizures?  (publication attached)
早期診斷結節性硬化症:與時間賽跑。如何在癲癇發作前做出診斷?(附件:www.ncbi.nlm.nih.gov/pubmed/29378663)

Additional Information 
附加信息
A report on the session we had together is also attached. Please review and let us know if you have any changes or additions.
還附上了我們在一起開會的會議報告。 如果您有任何更改或添加,請查看並告知我們。
 
‧Over the next few months, we will be developing an information portal for TSCi members on the TSCi website (www.tscinternational.org). We invite you to share any resources your association has developed that could be beneficial to all to include on the portal.
在接下來的幾個月中,我們將在TSCi網站(www.tscinternational.org)上為TSCi成員開發信息門戶。 我們邀請您分享您的協會開發的任何資源,這些資源可能對所有人都有益,包括在門戶網站上。


TSCi Working Group  TSCi工作組
 
The TSCi Working Group is accepting members for 2019-2020. Please let us know as soon as possible if you would like to join the group. 
TSCi工作組正在接受2019-2020的成員。 如果您想加入該組,請盡快通知我們。
 
Co-Chairs: Eva Schoeters (Belgium) and Katie Smith  (USA); Members include: Stig Magne Evju Brekken (Norway); Carla Fladrowski (Italy); Jennifer Flinn (Canada); Piotr Gieraltowski (Poland); Wesley Gomes (Brazil); Karina Stormfeldt Hjarsen (Denmark), Berit Oberg (Sweden); Micaela Rozenberg (Portugal) 
共同主席:Eva Schoeters(比利時)和Katie Smith(美國); 成員包括:Stig Magne Evju Brekken(挪威); Carla Fladrowski(意大利); 珍妮弗弗林(加拿大); Piotr Gieraltowski(波蘭); 韋斯利戈麥斯(巴西); Karina Stormfeldt Hjarsen(丹麥),Berit Oberg(瑞典); Micaela Rozenberg(葡萄牙)

And lastly, please let us know how you experienced the TSCi members meeting and if you have any feedback with regards to: 
最後,請告訴我們您如何體驗TSCi會員會議,如果您對以下方面有任何反饋意見:
‧ the communication beforehand  事先溝通
‧ the help in getting here  到達這裡的幫助
‧ the networking possibilities  網絡可能性
‧ the themes addressed during the meeting  會議期間討論的主題
‧ the relevance of the meeting to your patient organization  會議與患者組織的相關性

Kind regards!  親切的問候!

Katie & Eva
  
Katie Smith
Director, Government and Global Affairs
(301) 562-9890 x214
(800) 225-6872
801 Roeder Road, Suite 750
Silver Spring, MD 20910
www.tsalliance.org


 
10045 台北市中正區衡陽路6號8樓之7 TEL:02-23318852 Email : tscare@gmail.com 統編:48727810 【劃撥帳號】19973583