The Rarelink

The Rarelink Special needs families face challenges and blessings that those with typically-developing, non-diagnosed, children don't.

The Rarelink is a thought, an idea, really -- of a place where individuals, parents and caregivers can find support and connections when caring for a loved one with a rare disorder The added emotional toll of dealing with a diagnosis few others understand (including doctors) mean that these families need targeted services not easily found elsewhere online. While Katrina finishes earning her BA in

English, completing additional non-profit coursework at IUPUI, she is dedicated to serving others through The Rarelink.

10/26/2012

Joining the today at noon CDT (as myself: ) on Twitter - we'll be talking about Rare Disease if you want to join in I'd love to see familiar faces there! :D

02/23/2012

Every week we choose one of our fans as "fan of the week". No winners this time, but post on our wall or comment / like our posts and we might pick you next.

01/12/2012

Our fan of the week is... Danica Corey! Congratulations. To get picked as our next fan of the week, post on our wall or comment / like other posts and we might just pick you.

01/04/2012

As we're heading into the new year - what is one medical or personal thing relating to your special person with a rare disorder diagnosis that you want to take care of this year?

For us ... it will be finally getting Andy's braces going - not looking forward to the experience as with his rare disorder it will be more complicated to fix than regular brace-work.

Your turn! Hit "Like" if you love a person who just happens to have a little extra awesomeness in their life because of a special diagnosis!

01/03/2012

How has rare disease/disorders touched your life? Are you diagnosed? A loved one? Tell us a little about it here!

Merry Christmas! May you find peace, joy, and blessings today in the most important moments, the small ones you spend wi...
12/25/2011

Merry Christmas! May you find peace, joy, and blessings today in the most important moments, the small ones you spend with your family!

12/22/2011

Our fan of the week is... Brooke Anna Roberts! Congratulations. To get picked as our next fan of the week, post on our wall or comment / like other posts and we might just pick you.

12/21/2011

We've reached 100 Likes! Yay! Please spread the word to help us reach more people about our purpose: To raise awareness and support for families dealing with rare disorders! Please share and like and help us grow!

12/20/2011

The Rarelink is where to find out about Rare disorders and support those who have them! Have rare disorders touched your life or that of someone you love?

10/28/2011

As my guys' seizures are unpredictable and varied, and possibly due to the rare disorder they share (Axenfeld-Rieger Syndrome) I found this an interesting read:

Defined: 40 different types of seizures « Epilepsy Talk http://bit.ly/uaYZyd

09/20/2011

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face…. You must do the thing which you think you cannot do.
--Eleanor Roosevelt

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Lebanon, IN

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