台灣黏多醣症協會 Taiwan MPS Society

20/12/2025

2028 年黏多醣症世界大會地點正式公布：杜拜

黏多醣症世界大會自 1990 年於英國曼徹斯特首度舉辦以來，持續串聯全球醫師、科學家、病友與家庭，成為推動國際交流與合作的重要平台。

歷經多年發展，明年2026 年將迎來第 18 屆，於義大利佛羅倫斯舉行，而 2028 年更將首度進入中東地區，在杜拜舉辦，寫下新的歷史里程碑。

台灣黏多醣症協會自第 10 屆世界大會（2008 年，加拿大溫哥華）起正式加入黏多醣症世界組織，當時即為唯一來自亞洲的委員國。隨著組織影響力不斷擴大，今年委員國數正式成長至 43 國，並在今年陸續迎來來自中東與中亞的新成員，包括伊朗與哈薩克，展現黏多醣症全球社群持續拓展的動能。

在這樣的國際脈絡下，台灣也於 2025 年進一步獲選為核心董事國之一，在全球 43 個委員國中遴選出 7 個董事國，且為其中唯一的亞洲國家，參與制定跨國病友聯繫的策略規劃與實際推動工作，持續為亞洲病友在國際舞台上發聲。

隨著組織版圖納入更多國家，2028 年世界大會選址杜拜，不僅回應了會員結構的多元化，也象徵黏多醣症國際合作正式邁入新的篇章。

IMPSN is excited to announce that Dubai, UAE has been selected as the host city for the 2028 International MPS Symposium.

This global Symposium brings together families, clinicians, researchers, advocates, and partners from around the world — united by a shared commitment to advancing the MPS community.

We look forward to welcoming the global IMPSN community to Dubai in 2028, in partnership with UAERDS.

📍 Dubai, UAE
📅 2028

Stay tuned as we share more about Dubai and what makes it the perfect host for MPS 2028!

10/12/2025

充滿感謝、音樂與歡笑的台灣Gala之夜，因為大家一起而如此難忘。台式宴席、幻術表演、舞蹈帶動、知性合唱，每一刻都精彩，每一刻都珍貴。影片回顧，再次體驗屬於我們的感動。

A night of gratitude, music, and laughter. Taiwanese banquet dishes, illusion acts, dance-led energy, and heartfelt choral moments. Relive these treasured moments of the Gala Night with us.

09/12/2025

黏多醣亞太義診隔天，四位專科醫師帶來精華解析與重點整理，一次掌握黏多醣照護最重要的方向。在黏多醣的路上，遺傳科醫師固然是關鍵，但各專科醫師的重要性更是不在話下。

從眼科、骨科、神經內科到神經外科，每一個面向都攸關孩子的健康與未來。現場開放 QA，病友家庭直接發問，聽見彼此共同面臨的挑戰與解答。

最後，我們想再次向這些最專業、最溫暖、最有愛的醫師們致上深深的謝意。他們兩天全程全心參與，只因心中惦記著每一位黏寶與家庭。台北榮總骨科部主任 蘇宇平醫師、台北榮總小兒神經外科 陳信宏醫師、花蓮慈濟醫院眼科部住任 李原傑醫師、彰化基督教醫院兒科部副主任 張通銘醫師，有你們同行，是我們最大的幸運❤️

APAC MPS Forum Highlight: The day after our free clinic, our four specialists returned to share focused guidance for every MPS family. Geneticists play an essential role in diagnosis, but on the lifelong MPS journey, the expertise of multiple specialists is just as vital.

From eyes to bones, from neurology to neurosurgery, each perspective helps families understand their path forward. The session closed with an open Q&A, creating a safe space for families to ask directly, learn from shared experiences, and receive answers grounded in years of clinical care.

Finally, we want to express our deepest gratitude to the most professional, compassionate, and dedicated experts we could ever hope for. They spent two full days with us, giving their time and their hearts, simply because they care for every MPS child and family. Dr. Yu-Ping Su (Director of Orthopedics Dept. at the Taipei Veterans General Hospital), Dr. Hsin-Hung Chen (Attending Physician of Pediatric Neurosurgery at the Taipei Veterans General Hospital), Dr. Yuan-Chieh Lee (Director of Ophthalmology Dept. at the Hualien Tzu Chi Hospital), and Dr. Tung-Ming Chang (Deputy Chief of Pediatrics Dept. at the Changhua Christian Hospital), walking this journey with you is our greatest blessing❤️

07/12/2025

黏多醣亞太會議經典翻新，醫療與文化交織的下午。專科義診與各國攤位，帶來關懷，也帶來連結。

眼科、骨科、神經內科、神經外科，四位專科醫師全程守護每一個家庭。等待的同時體驗新生兒篩檢血片、日本劍玉紙藝、英式聖誕拉炮、台灣夜市遊戲與珍奶。特別感謝由Baggy Su領軍從高雄北上的最強妝髮團隊，在晚會前讓每個家庭都星光熠熠。❤️吳易旻 王莉美 @陳暄雅 周于婷 tseng 陳聖燕❤️

A refreshed tradition of the MPS APAC Forum, an afternoon where medical care and culture came together. Specialist clinics and international cultural booths brought not only care, but connection.

Ophthalmology, orthopedics, neurology, and neurosurgery, our four specialists stood by to support every family. While waiting, families enjoyed hands-on activities: newborn screening dried blood spot practice, Japanese kendama & paper craft, British Christmas crackers, Taiwanese night-market games, and bubble tea. A special thank-you to the incredible hair and makeup team
who traveled from Kaohsiung and made every family shine before the gala night.

06/12/2025

第六屆黏多醣亞太論壇的重磅主題演講：
Harmatz教授從酵素、移植談到基因療法，從現行治療談到未來的突破方向，以他多年經驗為我們解析全球最新的治療進展。黏多醣的未來，比我們想像得更近。

At the 6th MPS APAC Forum, Dr. Paul Harmatz delivered a powerful keynote on advancing MPS care. From enzyme therapy and stem cell transplant to gene therapy and global treatment innovations. Drawing on decades of experience, he mapped out where MPS care is heading and how close the future truly is. A reminder that progress is not only possible, but already happening.

05/12/2025

第六屆黏多醣亞太會議，正式揭開序幕！
距離上次舉辦已相隔8年，期間歷經疫情，有病友成為天使，也迎來新會員加入，一起見證治療與照護的最新進展。三週前的今天，我們在台北101的夜景下迎接來自亞太的黏家人們。重逢、相遇、舉杯，開啟溫暖而美好的充實議程。

特別感謝印卡讚協助拍立得輸出、現場客製化照片展示、鎂光燈與專業的活動服務，讓這一夜的回憶更加閃亮、更加珍貴。歡迎大家留言處分享手中的照片！

The 6th Asia-Pacific MPS Forum officially began, a long-awaited gathering 8 years in the making. In the years between, we lived through a pandemic, said goodbye to beloved MPS angels, and welcomed new MPS families who now walk this journey with us. 3 weeks ago today, we welcomed our MPS family from across Asia with the skyline of Taipei 101 as our backdrop. We reconnected with old friends, met new ones, and raised a toast to the days ahead.

Special thanks to Momentos for the instant photo printing, custom photo displays, studio lighting, and their professional on-site support that made the night shine even brighter. Please share your photos from that night with us in the comments below.

04/12/2025

走進台灣的新生兒篩檢中心：
高峰會議第二天，我們走出會議室，品嚐完台式小火鍋後，前往新生兒篩檢中心，親眼看看每一滴血點如何為孩子帶來希望。

15年前，協會與中華民國衛生保健基金會新生兒篩檢中心花了 18 個月走遍全台，最終收集到 52 位黏寶寶的血液樣本，成為推動黏多醣症新生兒篩檢的關鍵基石。當時，保健中心江傳箕所長特地添購了一台零下 80 度的冷凍庫，只為妥善保存這些珍貴的樣本；而這些樣本至今仍被完整守護著。15年後的今天，我們帶著來自世界各地的委員，親身走訪當年我們如何一步步做到的。現場也再次感受到台灣獨有的「乖乖文化」。只要機器上放著一包乖乖，就能「乖乖運作」。人手一包乖乖，大家都乖乖，這份可愛又暖心的堅持，也默默守護著每一項重要的檢驗工作。

Inside Taiwan's Newborn Screening Center:
Day 2 of the NBS Summit, we stepped out of the meeting room for a quick Taiwanese hotpot lunch followed by a field visit to see firsthand how every drop of blood can change a child’s future.

15 years ago, the Taiwan MPS Society and the Newborn Screening Center of the Chinese Foundation of Health spent 18 months traveling across Taiwan, ultimately collecting blood samples from 52 MPS children. These precious samples became the foundation that made MPS newborn screening possible. Then Director, the late Dr. Chiang, purchased a special -80°C freezer solely to preserve them, and these samples remain safely protected to this day. Fast forward to 15 years now, we walked into the same center with delegates from around the world to show them how this journey first began. And in true Taiwanese fashion, we also saw the beloved “Guai-Guai” snacks placed on machines to make sure everything runs smoothly. It's a small, heartfelt tradition that has quietly supported every critical test performed here.

03/12/2025

全球同聲：各國的挑戰與進展
新生兒篩檢高峰會精華：全球專家齊聚分享，推動新生兒篩檢的挑戰、突破與下一步方向。場下更有來自英國、美國、加拿大、墨西哥、德國、西班牙、匈牙利、南非、香港、瑞士與中東的病友組織、醫師及藥廠代表，共同交流彼此的經驗與願景。

Global NBS: Challenges & Progress
Newborn Screening Summit Highlights: Experts from around the world share what’s working (and what still needs to change) in MPS newborn screening. In the audience were patient groups, clinicians, and industry partners representing the UK, USA, Canada, Mexico, Germany, Spain, Hungary, South Africa, Hong Kong China, Switzerland and the Middle East! This diverse group were all gathered to exchange insights and strengthen our shared mission.

02/12/2025

高峰會第一天在一場聚焦健保制度如何影響新生兒篩檢與長期照護的重要討論中畫下句點。晚上，我們在台式鴨宴中延續這份交流與溫度，為接下來的旅程做準備。

We wrapped up the first day of the NBS Summit with an important conversation on how Taiwan’s National Health Insurance shapes newborn screening and long-term care. In the evening, a Taiwanese duck feast brought everyone together. We shared stories, warmth, and a sense of partnership for the days ahead.

01/12/2025

十年努力、一步一腳印，台灣如何做到全球領先的黏多醣新生兒篩檢？一起回顧這段旅程。台灣黏多醣症新生兒篩檢高峰會2025年11月13日精華片段，歡迎分享。

A look back at how Taiwan built the world’s leading MPS newborn screening program. One decade, one vision, and one united community.

30/11/2025

感謝大家參與今年11月於台北君悅酒店舉行的「台灣新生兒篩檢高峰會」暨「第六屆亞太黏多醣專業照顧教育會議」！
這個月，來自世界各地的醫師、專家、病友、家屬與倡議者在台北相聚，用四天的時間分享最新醫療進展、真誠交流，也一起看見黏多醣社群的力量。

感謝每一位親臨現場的朋友，因為你們，這場活動才如此溫暖、如此扎實。下方是本次的雙語手冊，讓大家可以回顧議程與講者，也讓沒能到場的朋友同樣掌握重點。歡迎有參與的大家在自己印象最深刻的講師/醫師/活動的頁面留下心得或感想！

接下來的幾天，我們會陸續上傳活動精華短影音。無論你是錯過了這次聚會，或是想再回味當時的感動，都歡迎一起觀看。

再次感謝所有講者、志工、病友及家庭的投入。讓我們繼續攜手，為黏多醣與新生兒篩檢的未來前進。

Thank you for joining us at the Taiwan Newborn Screening Summit & the 6th Asia-Pacific MPS Educational Forum! This November, our global MPS community gathered in Taipei for four days of learning, connection, and shared purpose. From groundbreaking newborn screening updates to heartfelt conversations among families, every moment reminded us why this mission matters.

For everyone who joined us, thank you for bringing knowledge, passion, and warmth. For those who couldn’t be there, we’ve got you covered.

We’re sharing our full bilingual conference booklet so you can revisit the sessions, speakers, and program that shaped this year’s event.

Over the next few days, we’ll be releasing highlight reels, perfect for reliving our time together or experiencing it for the first time.

Thank you again to our speakers, volunteers, families, and partners. Together, we continue to push forward the future of MPS care and newborn screening.

04/06/2025

⭐講師工作現場直擊⭐

陳小然博士將帶我們走進篩檢實驗室第一線。在那裡，每一滴血都可能改變一個家庭的未來。

她參與打造了台灣第一個國家級新生兒篩檢實驗室，現任衛生保健基金會 新生兒篩檢中心的資深研究員，負責包括 MPS及其他溶小體儲積症(LSDs)等罕病的篩檢。

在高峰會上，她將分享：
🔬 實驗室十年前的發展故事
🩸 血液樣本從送達到確診的完整流程
🧬 早期發現對病患的重要性

11 月，來台北見證科學與生命的交會
更多資訊：https://www.taiwanmps2025nbssummit.com/

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⭐Speakers-in-Action Series⭐
Dr. Hsiao-Jan Chen takes us behind the lab doors—where every drop of blood could mean a life changed.

As a senior researcher at The Chinese Foundation of Health, she helped build Taiwan’s national newborn screening lab from scratch. Now, she leads major programs detecting rare genetic disorders like MPS and other LSDs.

At our summit, she’ll guide us through:
🔬 How the lab began 10 years ago
🩸 What happens to your sample after screening—from arrival to diagnosis
🧬 Why early detection matters in rare disease

Come see the science in action this November in Taipei.
More info & Registration: https://www.taiwanmps2025nbssummit.com/