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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Again, this is copied from a fantastic resources provided by the University of Minnesota’s Health Systems. If you are a parent, reading this list might reassure you that you are already making good choices! For friends, you might get ideas for areas where you can offer a family support.
Stay involved and give information
Discuss with your [...]
When I knew I was expecting my first child, I quickly bought books about racing multi-race children. I wanted to be prepared for the ups and downs, to know what to expect as my child grows up and has to navigate a world where his complexion will become an important factor in his self-identity. But [...]
“My friend’s child was just diagnosed with a rare disease. What do I say?”
“My sister has been struggling to take care of herself and her family through her son’s illness over the past two years. What else can I do to show her that I am here for her?”
“My cousin just lost her daughter to a rare [...]
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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