a place to see, talk, learn and share !
As families and carers, we learn and discover a lot
This experiential knowledge can be shared. That's why we talk about our openness philosophy. Together with friends and experts, we will solve questions about the rare condition.
All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at:
Send a email: wiki@waihonapedia.org
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