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Lets rephrase, can anyone give me names of any kind of rare genetic disorders?
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Default Lets rephrase, can anyone give me names of any kind of rare genetic disorders? - 12-28-2008, 01:38 PM

information can be provided is possible.
   
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Default 01-08-2009, 08:25 PM

Tay-Sachs disease is a rare genetic disorder.
   
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Default 04-06-2009, 03:25 AM

If you just need some names of genetic disorders, research which disorders are screened for with the PKU test in the hospital. It screens for the metabolic genetic disorder"phenylketonuria"and others such as"maple syrup urine disease"Hemochromatosis is a rare genetic disorder in which the body abnormally stores iron. It is actually treated by blood-letting - by removing a pint of blood periodically to get extra iron out of the person's system.Congenital hemolytic spherocytosis is a fairly rare blood disorder in which the red blood cells are sphere-shaped, like a ball, rather than disc-shaped (like a Werther's Original candy)
   
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Default 05-20-2009, 01:05 AM

cystic fibrosis
   
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Default 06-02-2009, 09:05 PM

This is actually my great neice:How The Magic Foundation Was Founded in 1989"This imaginary scenario is the harsh reality that thousands of parents face each day:Because we lived through it alone- MAGIC was born.Say you take your child to the doctor because he just doesn’t seem to be growing right. He/she might be a picky eater. You try to push your concerns away by thinking well grandma was kind of small. But something deep inside you keeps nagging at you-telling you that something is not right. And so...just to be sure...you make an appointment with your child’s doctor.Suddenly, you find yourself shocked as you hear,"Mr. and Mrs. Miller, I believe your son has a medical condition called (for example) Growth Hormone Deficiency. This is a rare disorder. And frankly I've never had another patient with this, so I’d like for him to see a specialist.” As a parent what do you do? Well I’ll tell you what we did-we went into parental protection overdrive! All senses were on high alert....panic, fear and confusion.For us there was no MAGIC Foundation, but thankfully we did eventually find each other. We had children with Growth Hormone Deficiency. Three of us were from Illinois, one from California and the other from Oklahoma. We ran our phone bills through the roof, sharing details about our children’s medical treatments. We were our own self-made support group. We all studied, researched, and contacted everyone we could.Little did we realize that our daily calls were the beginning of what would, one year later, become The MAGIC Foundation. We were legally incorporated October 29, 2023 in the state of Illinois. And recognized as a 501(c)(3) tax-exempt organization by the IRS. The humble"early days"forged the path of what is now recognized as:The world's largest organization for growth related disorders."Click on the link for more information on Russell-Silver Syndrome from the Magic web site.
   
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Default 06-19-2009, 04:19 PM

i have one called arteriovenous malformation on my left frontal lobe of the brain. causes sever headaches seizures and huge medical bills. angiograms every other year MRI every year and i could have a hematoma if my head has a big impact from a car accident or something hitting my head. treatments straight line radiation a type of glue that lasts maybe seven years or if they can get to it through surgery they can remove it that way but that is not an option for me.
   
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Default 07-03-2009, 03:27 AM

Charcot-Marie Tooth
   
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