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Rare Is Special Staff

Be real and respect the patient

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When I was nursing student, I met a 50 year old beautiful lady who had ALS. She was waiting for me, I noticed a slight movement of her lips as her way of smiling at me every morning at 8:30am. Just like clockwork, her husband arrived shortly after I did.
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Behcet’s Disease Awareness Day: May 20th

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Raise more awareness of Behcet’s Disease! May 20th is Behcet’s Awareness Day. Behcet’s Disease is one of the rare diseases in US that is characterized by blood vessel inflammation throughout the body.
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Cleaner Environment, Healthier Life – Cleaning San Diego’s Manzanita Canyon

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Rare Is Special volunteered in cleaning drive organized by Project Helping led by Ali Muhammad, a Marine and the "Phoenix Leader" at Project Helping. Volunteers gathered 225 pounds of trash and cleaned 12 graffiti from the 1-mile-long Manzanita Canyon in San Diego.
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Kana’s Story: Vasculitis Patient Conference

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Looking back at my experience during a medical conference, I remember a wonderful lady with a very specific disease. Her name was Emily (not the real name for privacy) and the disease is called Behcet’s Disease.
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Forbes features CDG Rare Disease Day Symposium

Forbes.com publishes an article featuring “SBP Rare Disease Day Symposium: Human Glycosylation Disorders“, authored by Dr. Henry Miller from Stanford University. Dr. Miller was one of the speakers at the symposium.
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Rare Diseases and Regulatory Affairs: Rare-is-Special at SDRAN talk

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On Wednesday, March 16th, San Diego Regulatory Affairs Network (SDRAN) organized a talk focused on “Regulatory Affairs in Orphan Drug Development”.
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KPBS Radio covers of this year’s Rare Disease Day Sumposium in San Diego

Kudos to Dr. Hudson Freeze and supporting groups for their commitment and research in Rare Diseases. Thanks KPBS for coverage of this year’s event (SBP Rare Disease Day Symposium: Human Glycosylation Disorders, San Diego).
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Recent Articles

Behcet’s Disease Awareness Day: May 20th
May 20, 2020
Cleaner Environment, Healthier Life – Cleaning San Diego’s Manzanita Canyon
July 9, 2016
Kana’s Story: Vasculitis Patient Conference
May 24, 2016

Submit Your Story

Rare Is Special aims to connect people with rare disease with others with the same disease as well as researchers and doctors working in the field. One way to do so is by publishing people’s stories and experiences. By contributing your story, you will be able to reach and inspire others with the same disease and motivate researchers and scientist who do work in the same rare disease.

If you are interested in submitting your story, please send us your story at contact@rareisspecial.com