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Rare Disease

Giving Thanks in 2019

Author : Gina Hann Date : November 19, 2019 Comment : No Comments

This journey has brought us to today, so are we most thankful for? Every. Day. Awesome.

Category : Blog batten, batten disease, clinical trial, cln7, gene therapy, hope, joseph, Rare Disease Read More

Top five tips I’ve learned as a rare disease parent – Tip #1

Author : Gina Hann Date : July 26, 2018 Comment : No Comments

Welcome to being a rare disease parent. I haven’t been here that long, but I have learned a few pointers so far…

Category : Blog batten disease, BDSRA, cln7, gene therapy, Global Genes, NIH, NORD, Parenting, Rare Disease, Rare Disease DFW, Resources, UT Southwestern Read More

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