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Is to bring together, provide a voice and share knowledge to anyone who has ever been or may ever be touched by Lesch-Nyhan. In our initiative to support individuals, we will coordinate communications from others. Although personal experiences are unique, they can offer a sense of compassion and understanding unlike anyone else.
Our aim is to empower individuals, their families, friends and healthcare professionals to be advocates, sharing their knowledge and experiences to help others. In addition, we hope to spark an interest in others to continue research efforts that may help to prevent or even one day provide a cure!
In an attempt to reach as broad of an audience as possible, this group was formed out of an inspiration to bring support and science together, in one unified effort. By offering direction in finding appropriate resources and teaching one to use their voice, we hope to alleviate some of the day to day struggles, along with updated and more effective treatment options for Lesch-Nyhan.
Is to create awareness in the community. This will allow for an earlier diagnosis, a quicker treatment regiment and the possibility of alternate research opportunities.
An annual gathering will be held to connect families. These gatherings will give others the ability to share experiences and hear about various topics affecting these individuals.
We understand that each individuals situation and needs are unique to them. Tell us more about what you're looking for, and we will get back to you soon with some ideas.
934 Tarlton Road Circleville, OH 43113 us
Your support and contributions will enable us to meet our goals and improve conditions. Your generous donation will fund our mission.
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