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for PATIENTS & FAMILIES Patient/Caregiver Support Group Data Mapping Project Rare Disease Databases Undiagnosed Patient Information Current Care Problems Patient Registries 101 Genetic Counseling 101 Newborn Screening 101 Resources Surveys for PROVIDERS & CLINICIANS Letter to Clinicians Current Care Problems Genetic Career Pathways Forums (Formally Medical Genetics Career Fairs) RDD Speaker Series RNE Annual Conference Data Mapping Project

Living with Rare

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

Mitochondrial Disease Interview with Melissa Hoyt
Mitochondrial Disease Interview with Melissa Hoyt
Julie GortzeSeptember 23, 2021
8 Things People Living with Rare Disease Wish You Understood
8 Things People Living with Rare Disease Wish You Understood
Julie GortzeAugust 23, 2021
EDS Awareness Month
EDS Awareness Month
Julie GortzeMay 17, 2021
Immeasurable Hope and Strength
Immeasurable Hope and Strength
Julie GortzeApril 1, 2021
February 2021
February 2021
Julie GortzeFebruary 8, 2021
It's just Tuesday.
It's just Tuesday.
Julie GortzeOctober 27, 2020
Snowflakes and Superheroes
Snowflakes and Superheroes
Julie GortzeOctober 27, 2020
“Can I come into the out now?” - Home (DreamWorks Animation)
“Can I come into the out now?” - Home (DreamWorks Animation)
Julie GortzeAugust 20, 2020
Self Care During A Pandemic
Self Care During A Pandemic
Julie GortzeJuly 9, 2020
"Frogging Feelings"
"Frogging Feelings"
Julie GortzeOctober 17, 2018
Support – Importance of Finding That Connection with Others Who “Get It”
Support – Importance of Finding That Connection with Others Who “Get It”
Julie GortzeOctober 6, 2018
Dreaming of Desserts
Dreaming of Desserts
Julie GortzeSeptember 19, 2018
Ticks
Ticks
Julie GortzeJune 13, 2018
Virtual Medical Visits
Virtual Medical Visits
Julie GortzeMay 13, 2018
Service Dogs
Service Dogs
Julie GortzeApril 3, 2018
Disaster and Emergency Planning
Disaster and Emergency Planning
Julie GortzeMarch 3, 2018
Rare Disease Day
Rare Disease Day
Julie GortzeJanuary 31, 2018
Caring for the Caregiver
Caring for the Caregiver
Julie GortzeJanuary 7, 2018
Orphan Drug Tax Credit
Orphan Drug Tax Credit
Julie GortzeDecember 4, 2017
November 9th is Genetic Counselor Awareness Day
November 9th is Genetic Counselor Awareness Day
Julie GortzeNovember 9, 2017
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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.