Patient Stories

Eden Tansey

Eden's Story

Eden’s story is an all too familiar story for many people living with RRP. Unfortunately, it is nearly the exact same story of patients diagnosed over 50 years ago. The standard treatment option, repetitive and traumatic surgeries forever damaging the vocal cords, has not changed in over half a century. In many developing countries, the standard treatment option is often a tracheotomy, due to a lack of resources by the family or medical community. As a foundation, we refuse to allow this story to continue for the next generation.  

We are on the cusp of finding non surgical treatment options, and hopefully one day soon a cure, but we need your support to continue moving forward. Your donation and support are so deeply appreciated, and provide hope for our current RRP warriors and for the generation to come.

we believe that we can change the world together

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Breaking News!!!

RRPF President, Kim McClellan to speak at the White House Rare Disease Forum

Tonight! February 28th @ 5:30PM EST