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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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Just a Mom Wanting to be Heard

Originally posted on Neely’s Miracle.

It’s why I built this site…

Neely’s recovery from ADEM (Acute Disseminating Encephalomyelitis) is just part of the story I hope to share with this web-site.

Neely’s condition and recovery have inspired many families over this year to share their stories with us. We’ve heard stories of amazing recoveries, rare conditions, frustrations with [...]

Desperate Measures

This is a repost from the Children’s Rare Disease Network.  It’s so poignant and familiar.  I could feel my heart racing as I read this story.

xo nora

*****

May 5, 2010 by Debbie Vaughan

This is one of the posts from my blog, “Coming Unglued”, about life with Ehlers-Danlos Syndrome which is a rare connective tissue disorder in which the body’s ability to produce [...]

give a voice to rare diseases with iWish

The iWish project is managed by CheckOrphan.  Please visit their website for more information.
Rare diseases need your voice, creative solutions and iWish.

iWish is designed to give rare diseases a voice and a face. Through your help, together we can help change the way the world looks at rare diseases by sensitizing people to their monumental [...]

Computer chips, worms and gray matter: more similar than you think

Even though this blog is about rare diseases and their impact on children and loved ones, I think its interesting to explore other topics related to biology, physiology, sociology, philosophy, etc.  Essentially I find a lot of seemingly unrelated things to be connected and like to spend time thinking and talking about overlap and the [...]

From Social Entrepreneurship to Social INTERpreneurship?

Here’s some food for thought……

In his 2010 Skoll World Forum speech, Jeff Skoll said: “Changing the world is a team sport, everyone has a role to play.”

Peter Deitz, a social media expert from Oxford proposed that delegates and speakers at the 2010 Skoll World Forum were describing, “a new drink that’s two parts Internet, five [...]

health care reform

I have to admit that I have been moved to tears more than once today.  Health care reform was passed last night and my son now can’t be rejected from plans due to his pre-existing conditions.  Several times we have have been without insurance and it has been terrifying.  He needs frequent surgeries to be able to [...]