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Welcome to our patient-centered blog, where we strive to demystify complex scientific topics into easily understandable language. Our mission is to empower patients and caregivers with knowledge, enabling them to ask informed questions about research advancements and strategies. We also aim to facilitate conscious decision-making regarding participation in natural history studies or potential clinical trials.

The blog is led by patients for patients. If you have any substantive comments or suggestions, please let us know:

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