Why Do We ROAR for RARE?

Rare disease patients and advocacy organisations are often asked what makes rare disease advocacy different?

Here are just a few reasons we advocate so hard for GSD1b:

✨We cannot look to large disease organizations for financial support. We are responsible for funding the research into our disease. The funds we raise come from patients, family, friends and our own communities. It’s bake sales, golf tournaments, selling tshirts, running marathons, hosting parties to move the needle forward.

✨We are a small patient population and we can only include those in studies and research who want to be found. To move research forward for things like better therapy and cures, we need data. We are responsible for funding projects to collect usable data for scientific research and the pool for this is very small.

✨We are very spread out, all over the world. There are not many of us and opportunities to connect in-person are few— and often involve resources and stable health to travel. If we want a community, we have to build it, online or otherwise.

✨We bear the burden of educating medical professionals and the world around us. For an ultra-rare disease like GSD1b, we cannot rely on medical professionals knowing about our disease— most have never heard of it and will not be familiar with treatment protocols. The care we receive depends on us being able to advocate and educate.

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