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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: pacs2research@gmail.com

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ABOUT US >

We are Malgorzata & Piotr, parents of little twin girls - one of them, Lena, is impacted by PACS2 mutation. We strive for finding the treatment for Lena and all children suffering from this syndrome.

If you want to get engaged in research, please contact us.

If you are a caregiver of PACS2 child - do not hesitate to write to us in case of any questions - we will try to help.

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