Comments for RareHealth Exchange http://rarehealthexchange.org A collaborative of pre-medical students trained to assess rare disease patient medical records and assist in the development of natural histories, at the University of Notre Dame’s Center for Rare and Neglected Diseases. Mon, 24 Jun 2013 17:34:37 +0000 hourly 1 https://wordpress.org/?v=4.8 Comment on Kennedy Disease by Jay http://rarehealthexchange.org/2013/01/11/kennedy-disease/#comment-29 Mon, 24 Jun 2013 17:34:37 +0000 http://rarehealthexchange.org/?p=293#comment-29 You make thgnis so clear. Thanks for taking the time!

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Comment on Kennedy Disease by Saddamhussain http://rarehealthexchange.org/2013/01/11/kennedy-disease/#comment-22 Fri, 25 Jan 2013 22:40:59 +0000 http://rarehealthexchange.org/?p=293#comment-22 I dont know anything about this type of caencr, but I fully support what you are saying. Everytime you turn around there is another new org supporting breat caencr, or a new corp donating to breast caencr. Luckily for me, leukemia does have a lot of funding, but no where near what breast caencr has. I wish some of these orgs and businesses would consider donating to other types. I mean, breast caencr has literally tons of money pouring in for research and treatment.I also wish there were more programs designed to help the patients financially. There are several programs that will reimburse some costs, but they only pay so much. And you still have to pay first. When I didnt have enough money to pay the parking fees at my hospital, there was no one to help. The social worker gave me a couple dollars to get out one day, but there were no programs, no where for me to turn other than to beg from other people.

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Comment on Jose A. Bufill, M.D. St. Joseph Regional Medical Center, South Bend by Tio http://rarehealthexchange.org/2012/09/30/jose-a-bufill-m-d-st-joseph-regional-medical-center-south-bend/#comment-21 Fri, 25 Jan 2013 19:37:29 +0000 http://rarehealthexchange.org/?p=281#comment-21 It’s good to get a fresh way of lioonkg at it.

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Comment on Patient Family Visit: Tylor, Jenn, & Sy by Majid http://rarehealthexchange.org/2012/04/04/patient-family-visit-tylor-jenn-sy/#comment-18 Mon, 01 Oct 2012 17:55:12 +0000 http://rarehealthexchange.org/?p=266#comment-18 It’s taken me too long to respond to your kind commnets- I’m sorry about that.Emma Rose, thank you for taking the time to sharing your thoughts about the pieces- it means a lot coming from someone so creative as yourself.Allie, Tamae and Karen, your support means so much to me and makes me want to keep going making these things! Thank you for taking the time to post.I think of Opa all the time- isn’t it true that even though you may not spend lots of time with certain people, they affect you and your life decisions so powerfully? xo c

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Comment on University of Notre Dame’s Rare Disease Day Dinner by Baldyrgan http://rarehealthexchange.org/2012/03/05/university-of-notre-dames-rare-disease-day-dinner/#comment-13 Wed, 25 Jul 2012 06:32:14 +0000 http://rarehealthexchange.org/?p=168#comment-13 Yes a family hitosry of it increases your chances of developing it. I am 32 and I have had this stupid disease for about the past 10 years although I never knew what it was until about a year ago. I have no health insurance so I haven’t been diagnosed yet, but I fit all the symptoms, have 14 of the 18 tender points, have had severe stress my entire life and several traumatic injuries that could have triggered it, and my mother was diagnosed with it (back when it was being called Fibrositis).I was actually happy to have discovered this disease because it meant I wasn’t just a fat, lazy, fruitcake but then it still sucks to have it. I can’t believe how much it has affected my life, I feel like a little old lady. It is still very misunderstood and most people I have told about it kind of roll their eyes at me because I’m just too young to be feeling like this, but it is becoming more known. Hopefully they will find some better medication (so far I have tried Cymbalta with not much success). Was this answer helpful?

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Comment on Patient Family Visit: Tylor, Jenn, & Sy by Abdel http://rarehealthexchange.org/2012/04/04/patient-family-visit-tylor-jenn-sy/#comment-11 Sun, 03 Jun 2012 23:32:07 +0000 http://rarehealthexchange.org/?p=266#comment-11 Sorry to hear about your grandfather.We cnoant be creative if we don’t take risks thank you for taking this risk for creating and sharing with us, taking that leap that maybe your Opa didn’t I love your work and also love seeing what photographers do when they are creating images just for themselves.I think these are very interesting, thought-provoking pieces I can see them hanging in an art gallery there are many elements in the top photo that I didn’t notice at first, really interesting placement of the subjects and I love the amber tones on top of the black & white in the bottom image it’s like warmth on top of the coldness of the people walking away from the desperate woman and the sharpness of the fence.

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Comment on Patient Family Visit: Tylor, Jenn, & Sy by Neha http://rarehealthexchange.org/2012/04/04/patient-family-visit-tylor-jenn-sy/#comment-10 Sun, 03 Jun 2012 17:37:51 +0000 http://rarehealthexchange.org/?p=266#comment-10 I’m so glad that everyone got so much out of Tylor’s visit. a0It seems he had a wofudrnel trip. a0Thank you for taking ana0interesta0in Tylor’s story and allowing Jenn to share thea0journeya0he has been on.Jill RichardsonTylor’sa0stepmoma0

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Comment on Marc Patterson M.D. Mayo Clinic. An Introduction to Neurometabolic Disease by Johnavon http://rarehealthexchange.org/2012/03/07/marc-patterson-m-d-an-introduction-to-neurometabolic-disease/#comment-7 Tue, 24 Apr 2012 08:42:08 +0000 http://rarehealthexchange.org/?p=237#comment-7 These pieces rlealy set a standard in the industry.

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Comment on Patient Family Visit: Tylor, Jenn, & Sy by Jill Richardson http://rarehealthexchange.org/2012/04/04/patient-family-visit-tylor-jenn-sy/#comment-6 Mon, 23 Apr 2012 17:15:50 +0000 http://rarehealthexchange.org/?p=266#comment-6 I’m so glad that everyone got so much out of Tylor’s visit.  It seems he had a wonderful trip.  Thank you for taking an interest in Tylor’s story and allowing Jenn to share the journey he has been on.

Jill Richardson
Tylor’s stepmom 

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Comment on Patient Family Visit: Tylor, Jenn, & Sy by Jayde http://rarehealthexchange.org/2012/04/04/patient-family-visit-tylor-jenn-sy/#comment-4 Mon, 23 Apr 2012 08:48:18 +0000 http://rarehealthexchange.org/?p=266#comment-4 It’s like you’re on a misison to save me time and money!

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