By Payel Bhattacharya, living with von Hippel-Lindau syndrome I, Miss Payel Bhattacharya, was an unusual child. I was never concerned with petty things, the trivia, the dregs in life. My…
By Jodee Redmond from In the Cloud Copy Glioblastomas are tumors that are particularly difficult to treat. They start forming in the glial cells of the brain and spinal cord…
by Danielle Bradshaw from In The Cloud Copy Hereditary angioedema (HAE) is a rare condition in which a person has swelling beneath their skin (which can occur in any part…
By: Natalie Homan from In The Cloud Copy Connie Elson was a happy, independent little girl before she started showing worrying symptoms at the age of four. After many doctor…
By Jodee Redmond from In The Cloud Copy Hannah Witton, a YouTuber with 600,000 subscribers to her sex and relationships channel, got tired of hearing comments that people with disabilities…
By Jodee Redmond from In The Cloud Copy At one time, hearing a cystic fibrosis (CF) diagnosis was tantamount to a death sentence for a young person. The median survival…
Because I will be looking for a job from a rare but certainly not unique place of being, I decided to reach out to a mentor who lives with the…
By Jodee Redmond from In The Cloud Copy Assemblywoman Nicole Malliotakis (R-East Shore/South Brooklyn) introduced Ava Rose Garnett in New York’s Capitol building in Albany recently. Miss Garnett is a…
By Danielle Bradshaw from In The Cloud Copy Sean and Josie Kelly, a New York native couple, have had a newborn son named Sawyer who was born with a rare…
by Jodee Redmond from In The Cloud Copy Rich Horgan is the founder of the Boston-based biotech non-profit, Cure Rare Diseases. The 28-year-old decided to take action over concerns about…
By Caitlin Seida from In The Cloud Copy If you've never heard of CDG, or congenital disorders of glycosylation, you're not alone. The rare family of diseases, all inheritable, are…
Hi everyone! Times are hard right now, but we hope you and your loved ones are staying safe right now. Today, we're bringing you three stories: first, we have some…
Happy day 134 of quarantine! Today, we're highlight four articles. First, to lift your spirits, we have a story of a young boy who made a recovery from a rare…
Hi everyone, We hope everyone's doing okay-- whatever that means for you right now. Today we have an article about how rationing systems during COVID-19 pandemic is affecting people who…
Hi everyone, Another week of life in COVID-19 era has passed! Today we have an article on a potential Coronavirus safety update. Next, we have the release of a new…
Hi everyone, We hope you're having a peaceful quarantine and taking care of yourself. As we all know, updates about COVID-19 is dominating the news right now. Of course, infomation…
For generations, economists, pundits, and holders of public office have told the poor that pulling themselves out of poverty was just a matter of acquiring the right skills, making the…
Hi everyone, We know you might be overwhelemed with virus news-- and next week, we'll switch the theme up. For now, we wanted to send three updates your way about…
Patient Worthy's main focus is to share information and help patients in any way we can. We recently saw this video and thought that it was relevant for our followers. Created by Snow Companies, it is a virtually co-created user-generated video…
By Jodee Redmond from In The Cloud Copy Frankie Hewitson spent more than her fair share of time in the hospital during her childhood. The 27-year-old was diagnosed with three…
By Danielle Bradshaw from In The Cloud Copy Bill Bradford has made helping others a lifelong habit, but now this veteran and former paramedic needs the help of others to…
By Jodee Redmond from In The Cloud Copy Massachusetts Institute of Technology (MIT) researchers have recently announced they have identified hundreds of genes that are required for neuron survival. The…
By Rachel Whetstone from In The Cloud Copy New research is exploring the relationship between circadian rhythms in the brain and bacterial fragments. It’s possible that bacteria has an influence…
By Natalie Homan from In The Cloud Copy Spina bifida is a condition that appears when a developing baby’s neural tube doesn’t close completely. The most severe form of spina…
Hi everyone, These past few weeks have been a lot- for everyone. People in the rare disease community may be struggling with aspects particular to their disease state, like how…
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