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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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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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topics

I’ve identified the eleven topics below to be of critical importance to me, and yet I have found few sources of support outside of my immediate circle of family and friends.  I hope to develop pages for each of the topics below and imagine that the list will change as I further develop my thinking.

  1. Relationships
    1. Interpersonal
    2. Intrapersonal
      1. Relationship between multiple caregivers
      2. Relationship between caregivers and ill child
      3. Relationship  between caregivers and well sibling(s)
      4. Relationship between ill child and well sibling(s)
  2. Information
    1. Acess
    2. Quality
    3. Quantity
  3. Health Care
    1. Acess
    2. Quality
    3. Quantity
  4. Power
    1. Language
    2. Culture
    3. Ethnicity
    4. Socioeconomic status
  5. Psychological dynamics
    1. Uncertainty
    2. Guilt
    3. Anxiety
  6. Financial impact
    1. Insurance
    2. Travel
    3. Miscellaneous Health Care Costs
  7. Educational components
    1. Learning styles
    2. Access to information
    3. Previous experiences
  8. Decision Making
  9. Communication
  10. Political
  11. Technological
  12. Historical
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