Pages
Projects
- Rare Talks Spotify Podcast
- BBC Sounds Health Check – TeachRare’s Partnership in Promoting Health and Well-being
- Metabolic Support UK Nomination
- Patient Expert for NICE – Teach Rare Project
- TeachRare’s Review in New Scientist: Gene Therapy Offers Hope for Children with Rare Diseases
- TeachRare’s Richard Poulin Recognized as Social Impact Hero by Authority Magazine
- SSIEM 2022 Symposium
- Houston AADC Meet Up 2022
- 14th European Epilepsy Congress
- European Medicines Agency Conference
- Rare Disease Day 2022
- International Epilepsy Congress – Advancing Research and Awareness to Improve Epilepsy Care
- 14th Congress of the European Paediatric Neurology Society
- Enrolling in Clinical Trials Workshop: Empowering Families of Children with Rare Diseases
- Child Neurology Foundation Genetic Testing
- Play-Based Learning Workshop: Enhancing Development for Children with Rare Diseases
- CheckRare Interview
- Annual Charity Fundraiser
Events
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- 波士頓看護者生活方式聚會
- 逃避排斥
- 來自印度的媽媽分享她的AADC基因治療經驗
- 行為治療事件
- 感覺統合虛擬活動
- 創建遺傳圖譜以改善診斷
- 言語治療活動
- AADC缺乏症的最佳基因療法
- 職業治療活動
- TeachRare 的物理治療活動 – 促進包容性和全民教育機會
- 罕見病家長的旅程：與TeachRare一起兜圈子
- 母親對AADC缺乏症的希望資訊
- 父親對AADC缺陷的看法
- 一位巴西媽媽關於AADC缺陷和希望的故事
- 工作中的祈禱和奇跡：來自TeachRare 的希望故事
- CareBears對Rylae的愛：一個為罕見病兒童提供希望和支援的故事
- Upstaza基因治療的創新
- 兒童適應性服裝
- 預防罕見病患兒誤吸
- 罕見病患兒基因治療前全面檢查的重要性
- 基因治療規劃
- 新冠疫情期間旅行
- 通過爬行無視統計數據
- 等待基因治療
- 秘密物理療法
- 基因治療后的物理治療
