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我們訪問了台北台大醫院AADC缺乏症患者協調員Ariel。Ariel在AADC缺乏症及其治療方面擁有豐富的經驗，並與我們分享了她的見解和經歷。

We interviewed Ariel, the AADC deficiency patient coordinator at the National Taiwan University (NTU) Hospital in Taipei, Taiwan. Ariel has the most extensive experience with AADC deficiency and treatment outside doctors. She shared her insight and expertise.

VALE Designs is at the forefront of providing practical, comfortable, and stylish clothing solutions for children with rare diseases. Their high-quality adaptive clothing addresses the unique challenges faced by these children, enhancing their quality of life and easing the burden on families and caregivers. Through their innovative approach and community involvement, VALE Designs significantly...

Full Story: teachrare.org/island-hopping-for-answers-and-treatment/ A mother from the Philippines recounts her journey of traveling between islands in the Pacific in search of answers, ultimately finding treatment for her son, who suffers from a rare disease known as aromatic l-amino acid decarboxylase deficiency.

Full Story: teachrare.org/island-hopping-for-answers-and-treatment/ A mother from the Philippines recounts her journey of traveling between islands in the Pacific in search of answers, ultimately finding treatment for her son, who suffers from a rare disease.

Full Story: aadcnews.com/columns/how-drama-therapy-helped-our-daughter-conquer-haircut-anxiety/ After years of struggling to get our daughter, Rylae-Ann, to sit for a haircut, we finally had a tear-free experience. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare genetic disorder that affects neurotransmitter production, including dopamine and serotonin. Thi...

Teach RARE: teachrare.org/zh-hant/ 在這段影片中，我們分享了一位母親得知她女兒罕見疾病的感人故事。這位母親的心路歷程充滿了掙扎與希望。更令人振奮的是，台大醫生的專業醫療和關懷，為她們的生活帶來了巨大的改變。跟隨我們一起了解這段充滿力量與愛的故事，見證醫療奇蹟如何改寫她們的命運。

Article: teachrare.org/bridging-barriers-a-journey-of-connection-and-hope-with-a-canadian-mom-in-the-aadc-deficiency-community/ Being part of the ultra-rare disease community of AADC deficiency, we understand the challenges of making connections. These connections become even more complex when we are scattered across the globe, with language and timezone barriers. Yet, as parents of a child wit...

Article: teachrare.org/bridging-barriers-a-journey-of-connection-and-hope-with-a-canadian-mom-in-the-aadc-deficiency-community/ Découvrez l'histoire inspirante de la façon dont les familles du monde entier surmontent les obstacles pour se connecter et se soutenir mutuellement au sein de la communauté des personnes déficientes de l'AADC. Suivez le parcours d’une éducatrice spécialisée/maman cana...

Article: teachrare.org/canadian-mom-journey-in-the-aadc-deficiency-community/ Being part of the ultra-rare disease community of AADC deficiency, we understand the challenges of making connections. These connections become even more complex when we are scattered across the globe, with language and timezone barriers. Yet, as parents of a child with AADC deficiency, we refuse to let these obstacle...

Interview: teachrare.org/from-pain-to-power-barby-ingles-journey-from-patient-to-advocate-to-political-influencer/ We were familiar with Ms. Barby Ingle through her work in the rare disease community. She was a positive and motivated leader, and then she transitioned from her non-profit leadership role to political leadership. This change caught our attention, and we felt compelled to listen to...

VALE Designs is at the forefront of providing practical, comfortable, and stylish clothing solutions for children with rare diseases. Their high-quality adaptive clothing addresses the unique challenges faced by these children, enhancing their quality of life and easing the burden on families and caregivers. Through their innovative approach and community involvement, VALE Designs significantly...

In June 2023, Teach RARE joined an event in Taiwan that brought together 30 families with the ultra-rare neurotransmitter disease AADC deficiency. In attendance was Prof. Hwu, a pediatrician and geneticist whom all the families knew very well. Dr. Hwu led the research for a gene therapy known as Upstaza, which is currently approved in the EU and UK and, hopefully very soon, the rest of the worl...

During a parent meetup in Taiwan, we interviewed Prof. Hwu to get his perspective on the past and future of AADC deficiency, specifically on gene therapy advancements. You can learn more about the event at: teachrare.org/prof-hwu-discusses-the-past-and-future-of-aadc-deficiency/

AADC 缺乏症兒童的大腦

The Brain of a Child with AADC Deficiency

La mente de un niño con deficiencia de AADC

Prof. Hong Explores AADC Deficiency Trailer

Taiwan Interview 3 - Yirui

Taiwan AADC Interview 2 - Hongyu

Taiwan AADC Interview 1 - Fei Fei and Emma

Home Therapy - Week 5

Home Therapy Lesson - Week 4

Power of Play

AADCd Awareness 2023

Rylae Speaks Out About Her Condition AADC Deficiency

Home Therapy Lesson - Week 3

Bangkok Caregiver Lifestyle Meet up

Home Therapy Lesson - Week 2 (add-on)