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.
About Mingle Sign up for Mingle below and join the Rare Disease Support community. You can create a profile, post comments, make friends, send private emails and more!
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For those of you who are new to this website, my son has JORRP, which you can read about here, and you can read more about his story here.
Ayrie’s breathing is deteriorating. I don’t know if it’s regrowth of the papillomas blocking his airway or a side-effect of the medicine he takes. I don’t want [...]
Okay, I know. With medical bills and other health related expenses, it’s hard to think about taking a vacation! But if possible, it’s also wonderful to relax together as a family, in an environment that takes the focus off of the illness or disease and puts the focus on enjoying the moment. [...]
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Tombolo Tombolo is our sister organization. Please visit www.tombolo.mn
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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