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.
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It seems that this article is saying that the new drug might treat JORRP and RRP. What do you think? Click here for the full article.
The new treatment is based on a form of genetic therapy called “antisense,” or AS, in which a synthesized strand of DNA or RNA targets the EGFR genes within a [...]
Here’s and excerpt from an email that I sent Ayrie’s surgeon this Sunday morning:
I am not sure how Ayrie is doing. This Monday will be 4 weeks since the date of his last surgery. This past week he has sounded as though he breathing is tight… I’m not sure how else to explain it. It’s as though he isn’t quite getting the full volume of air [...]
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 [...]
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Genetic Rounds: A Doctor’s Encounters in the Field that Revolutionized Medicine (Hardcover)
By (author) Robert Marion
List Price:
$24.95 USD
Used from:
$11.98 In Stock
I haven’t read the book yet, but I did listen to an interview with Dr. Marion on Minnesota Public Radio. Dr. Marion is a pediatric geneticist and has the unenviable role of telling parents that their [...]
Wired Magazine reports that scientists have discovered the true identity of a contagious form of cancer that is killing Tasmanian devils. The population has been devastated by this cancer and researchers were able to trace the source back twenty years to a single animal. It appears that the cancer cells are rouge cells [...]
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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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