We appreciate your brain may be full of information, but we would recommend considering signing up to the following organisations to enable better understanding of TANGO2, promote research and also enable you to access the support you deserve.
1. CoRDs Registry:
https://tango2research.org/research/registry/
CoRDS is a centralized international patient registry for rare diseases.
2. TANGO2 RESEARCH Foundation
https://tango2research.org/
3. Natural History Study
A study of patient history and progression of disease. This is critical for progress and finding treatments): https://tango2research.org/research/nhs/ They can simply email: tango2.research@bcm.edu Those enrolled will be automatically included in the movement disorders study. Description and more info can be found here: https://tango2research.org/movement-disorders-study/
4. The Movement Study
Link to follow
5. DLA and carers allowance if you think you may be eligible
https://www.gov.uk/disability-living-allowance-children/rates
6. Blue Badge if you have mobility issues
https://www.gov.uk/apply-blue-badge
7. Health Care Passport
8. EHCP if your child is in education
Other recommendations:
- Join our Research Learning Network: https://forum.tango2research.org/ people can ask questions and post anything they want to share or learn about. This is for doctors, researchers, families – anyone interested in TANGO2 deficiency disorder
- View our resources for families: https://tango2research.org/for-families/family-resources/ (the ER protocol and vitamin recommends are particularly important)