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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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World Voice Day

Every year on April 16, otolaryngologist-head and neck surgeons and other voice health professionals worldwide join together to recognize World Voice Day. World Voice Day encourages men and women, young and old, to assess their vocal health and take action to improve or maintain good voice habits. The American Academy of Otolaryngology-Head and Neck Surgery [...]

Rare Disease Day(s)

A repost from Science Blog.  I thought this was a nice summary of why rare disease day exists, and why ‘rare’ adds a dimension of complexity to disease identification, treatment and management.

This Sunday (28th February 2010) is ‘Rare Disease Day’, an annual event aimed at raising awareness of a multitude of rare diseases across the [...]

Moving Ahead Together: Celebrating the Legacy, Shaping the Future of Maternal and Child Health

Moving Ahead Together: Celebrating the Legacy, Shaping the Future of Maternal and Child Health
March 6-10, 2010
Gaylord National Hotel and Convention Center
National Harbor, MD

The goal of the 2010 AMCHP Conference is to advance the health of women, children and families by promoting innovations in MCH policy and programs, sharing best practices, developing state MCH leadership, and [...]

Women's Health 2010: The 18th Annual Congress

Women’s Health 2010: The 18th Annual Congress
Mar 26 – 28, 2010
Washington, DC

Women’s Health 2010: The 18th Annual Congress is sponsored by the VCU Institute for Women’s Health and Journal of Women’s Health, in collaboration with National Cancer Institute and the American Medical Association. This year’s Congress also marks the 95th Anniversary meeting of the [...]