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Living with Rare

A blog devoted to navigating and analyzing life with Rare and Complex Disorders.

Considerations in Genetic Testing
Considerations in Genetic Testing
Julie GortzeNovember 4, 2017
Never Underestimate the Power of Your Voice!
Never Underestimate the Power of Your Voice!
Julie GortzeOctober 5, 2017
Stolen Handicapped Placards and Projects to End the Crime.
Stolen Handicapped Placards and Projects to End the Crime.
Julie GortzeSeptember 1, 2017
Adjusting to a Rare Disease Diagnosis
Adjusting to a Rare Disease Diagnosis
Julie GortzeAugust 16, 2017
Ableism
Ableism
Julie GortzeAugust 8, 2017
A Review of IEPs and 504 Plans
A Review of IEPs and 504 Plans
Julie GortzeJuly 3, 2017
Chronic Illness and Energy Limits: Helping Others Understand
Chronic Illness and Energy Limits: Helping Others Understand
Julie GortzeJune 2, 2017
Label Me as a Person, Foremost and Always
Label Me as a Person, Foremost and Always
Julie GortzeMay 2, 2017
Glimpse into the Life of Living with a Rare Disease
Glimpse into the Life of Living with a Rare Disease
Julie GortzeMarch 31, 2017
Anti-disability Awareness? When research into disabilities might actually hurt disabled people.
Anti-disability Awareness? When research into disabilities might actually hurt disabled people.
RNESeptember 13, 2016
Is the Battle for Medical Care "Real", or Simply Perceived as Real?
Is the Battle for Medical Care "Real", or Simply Perceived as Real?
RNEAugust 11, 2016
Fatal Stress: Side-effects of a Broken System
Fatal Stress: Side-effects of a Broken System
RNEAugust 8, 2016
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​Disclaimer: The information on this website is not intended to diagnose or treat any condition. Information should be regarded as general guidance only. RNE shall not be liable for any action taken as a result of information taken from this site. RNE shall not be responsible for any information contained on sites linked to RNE's pages. Patients should consult their doctors before starting, stopping, or changing any medical treatments.