資訊及刊物

「望新藥 (SPINRAZA) 盼望與期望」 分享會 New Drug “SPINRAZA” Sharing Session

September 20, 2018

SMA家庭和病人都想知道更多新藥資料及相關保健知識,FSMA特於9月2日假香港國際城景酒店舉辦「望新藥 (SPINRAZA) 盼望與期望」 分享會,由經已接受新藥SPINRAZA療程注射的病人家長,分享試藥經驗,希望有助會員及家長對新藥的了解,共有80多會員及家長出席。我們非常榮幸和感激港島西醫院聯網總監陸志聰醫生特意出席是次活動。

Understanding that SMA families were eager to learn more about information related to new drugs and health care, FSMA organized a New Durg “SPINRAZA” Sharing Session at the Cityview Hotel on 2nd September. Parents of SMA patients who have been receiving treatment with the new drug SPINRAZA were invited to share their experience during the treatment. More than 80 members and their families attended the event. We were greatly honored and thankful to have Dr. C.C. Luk, Cluster Chief Executive of Hong Kong West Cluster, joining our event.

 

司儀:「望新藥 (SPINRAZA) 盼望與期望」 分享會開始了!

Our MC: Let the New Durg “SPINRAZA” Sharing Session begins!

 

謝謝FSMA創辦人及主席霍陳美玲博士為我們致開幕辭。

Dr. Mei Ling Fok, Founder & Chairman of FSMA, delivers the welcoming remarks.

 

已接受新藥療程的會員家長分享接受療程前的準備、治療過程及進度。

Parents of FSMA members, who have been receiving the new drug treatment, share their experience on preparation work, treatment process and progress on treatment.

 

 

謝謝FSMA執行委員黃婉冰女士為我們介紹藥物關注小組。藥物關注小組是一個由FSMA會員及家屬組成的互助小組,藉通過會員及基金間的攜手合作, 跟進藥物的最新情況。

Ms. Maria Wong, Executive Committee Member of FSMA, introduces the Medical Concern Group, which is a mutual aid group among FSMA members and families which works together with FSMA to keep track on the progress of new drug treatment.

 

感謝註冊物理治療師葉植強先生為我們分享胸肺保健及大肌肉訓練的資訊。

 

Thank you Mr. Ken Ip, registered physiotherapist, for sharing health care information on chest and pulmonary, as well as gross motor skills training.

 

前往美國參加2018 SMA研討會的會員家長為我們分享與研討會相關的新藥研究及資訊。

A parent of FSMA member who attended the 2018 SMA Conference in the U.S. shares the latest information on new drug research acquired during the conference.

 

 感謝港島西醫院聯網總監陸志聰醫生為我們作一個小分享。

Thank you Dr. C.C. Luk, Cluster Chief Executive of Hong Kong West Cluster, for giving us a sharing.

 

FSMA營運總監黃美娟女士宣佈會於10月離任,FSMA主席及創辦人霍陳美玲博士送花致意,答謝黃女士不辭勞苦地為FSMA貢獻。

Ms. Tina Wong, Chief Operating Officer of FSMA, announces she would step down from her post in October. Dr. Mei Ling Fok, Founder & Chairman of FSMA, expresses her appreciation with flowers for Tina’s strenuous work and contribution to FSMA.

 

與此同時,FSMA主席及創辦人霍陳美玲博士為我們介紹即將上任的行政總監張志輝先生,張先生會於10月正式上任。

Meanwhile, Dr. Mei Ling Fok introduces Mr. William Cheung, who will be on board in October as our Chief Executive Officer.

 

 

 

 

Share on Facebook
Share on Twitter
Please reload

​分類 Categories
最近項目 Recent Posts
Please reload

參考日期 Archive
Please reload

Follow Us
  • Facebook Basic Square
  • YouTube Social  Icon

​​Tel/電話 :  2811 1767

Fax/傳真 :  2510 7199
Email/電郵 :info@fsma.org.hk

Address​/地址: 

Room 1402, 14/F, SUP Tower, 83 King's Road, North Point, Hong Kong

​香港北角英皇道83號聯合出版大廈14樓1402室

© 2017 by Families of SMA (Spinal Muscular Atrophy) Charitable Trust.