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Projects
- BBC Sounds Health Check
- Metabolic Support UK Nomination
- Patient Expert for NICE
- New Scientist Gene Therapy Review
- Authority Magazine Social Impact Heros
- SSIEM 2022 Symposium
- Houston AADC Meet Up 2022
- 14th European Epilepsy Congress
- European Medicines Agency Conference
- Rare Disease Day 2022
- International Epilepsy Congress
- 14th Congress of the European Paediatric Neurology Society
- Enrolling in Clinical Trials Workshop
- Child Neurology Foundation Genetic Testing
- Play Based Learning Workshop
- CheckRare Interview
- Annual Charity Fundraiser
Posts
- Sensory Integration Virtual Event
- Creating a Genetic Profile to Improve Diagnosis
- Speech Therapy Event
- The Best Gene Therapy for AADC Deficiency
- Occupational Therapy Event
- Physical Therapy Event
- Rare Disease Parent Goes Full Circle
- A Mother’s Message of Hope for AADC Deficiency
- A Father Perspective on AADC Deficiency
- Brazilian Mom Shares AADC Deficiency Story
- Prayers and Miracles Work
- Developing a RARE Friendship
- The Innovation of Upstaza Gene Therapy
- Adaptive Clothing for Children
- Preventing Aspiration of Children with Rare Diseases
- Check Up Before Gene Therapy
- Planning for Gene Therapy
- Traveling During Covid
- Defying Statistics By Crawling
- The Wait For Gene Therapy
- Secret Physical Therapy
- Physical Therapy After Gene Therapy
