Aware I’m Rare
@AwareRare
Amanda Gonzalez-Bunster is a patient advocate with a rare disease. Her goal is to share her perspective on rare disease, chronic illness and disability.
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ORPHAN DRUGS save lives! Reach out to your senators to save the tax credit. Without it drug companies won’t invest in these treatments .
The link to the article is—yalemedicine.org/stories/geneti…
yalemedicine.org
A Life Saved By Genetic Sequencing
For years, physicians and specialists puzzled over Amanda Gonzalez-Bunster's unusual—and seemingly unrelated— symptoms, until a Yale doctor suggested genetic sequencing.
I'm excited to announce the publication of the article, "A Life Saved By Genetic Sequencing", about my journey to diagnosis.
It's #InvisibleDisabilitiesWeek. Everyone remember to not judge a book by its cover. #Epilepsy 💜
#InvisibleDisabilitiesWeek BEGINS today. You never know what your neighbor, co-worker are dealing with. #Dyslexia #Fibro #ChronicPain #ADHD
"If we don't network and share data, we won't be able to make this work" -Lewis M. Fredane, M.D. @RareDiseases #NORDSummit #datasharing
Oprah’s, The Wisdom of Sundays is inspirational! Its message is universal, but insightful for those with #raredisease and #chronicillness.
This is my rare disease sister Alani. She’s a warrior! She fights the fight everyday with a smile on her face. Her message is powerful!
So I’m having one of those days... I’m sick and I’m tired and I have to consciously remind myself this too shall pass.
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