Welcome to our site This site is a place for the people who love a child with a rare disease, disorder or illness… the child, parents, siblings, aunts, uncles, grandparents, guardians, cousins and beloved friends. I am the mother of a son with a rare pediatric disease, JORRP, and the last two years have been a journey for our family and loved ones. We have felt fear and triumph, desperation and hope. I have never felt more supported, or more isolated. I hope to use this website as a place to share information, support and stories. This website and community will grow through your contributions. So please, consider sharing information or a story or building a profile. Thank you. xo, nora
Aspiration We aspire to provide support for people impacted by rare pediatric diseases by sharing stories, providing information, and building community.
Donate If you have found this site to be helpful, please consider making a donation. Every dollar supports my work on this website or is applied directly to medical expenses.
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Okay, this post does not have much directly to do with rare pediatric diseases but it has a lot to do with what interests me… getting real people to make small changes that significantly support people’s health related needs!
An undergraduate student at Harvard observed at hospitals and realized that often there was nothing the doctor [...]
I have often been told by well meaning people to write a letter. The letters are meant to serve different purposes and to address a variety of hurdles that I have encountered. Letters to doctors, health insurance administrators, politicians, etc. But to be honest, I have never felt comfortable taking their advice. What would I [...]
More satire! I have written a lot about how much time it takes to manage health care… the appointments, insurance, travel arrangements, sending documents around, finding specialists, getting specialists to talk to each other and on and on. This video does a brilliant job of making that point by showing what air travel [...]
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Disclaimer Nothing on this site constitutes medical or legal advice. I am a mother and advocate who is engaged and enjoys sharing my family's experiences JORRP and news about rare diseases and health care. Please consult your own health care providers for advice on your unique situation.
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