Rare disease began shaping acclaimed photographer, Karen Haberberg's family years before she was born. Her parents had given birth to her older brother, who was diagnosed with Tay-Sachs. Tay-Sachs is a…
Painters, photographers, sculptors, and visual artists that defy categorization, take note! The EveryLife Foundation for Rare Diseases' Rare Artist Contest is back, for the ninth year in a row. The…
Care to be inspired today? There's a group of inspirational world-changers named SpringWorks Therapeutics. These pioneers are on a mission to unite scientists, biopharmaceutical partners, patient groups and philanthropists to…
Nope, we're not joking! US SWAT teams (Special Weapons And Tactics, military weapons-equipped law enforcement teams) have been asked to step in to help with backlogged FDA applications to get experimental treatments designated as orphan…
There's a very funny scene in an old Monty Python movie that shows a body collector calling, "Bring out your dead... Bring out your dead." He heaves another body onto…
At #RDDNIH, or Rare Disease Day at NIH, I was definitely troubled by a world map presented, that displayed emerging infectious diseases by region. Let's unpack this a little bit...…
If there is one thing clear at #RDDNIH, or Rare Disease Day at NIH, it's that there are amazing, brilliant people working hard for our community. The rare disease community…
If you are one in 1.3 million people, you might be born with a mutation in your CPS1 gene, causing you to have carbamoyl phosphate synthetase 1 deficiency or CPS1D.…
How much do I love that there’s a Pinterest page called 1000+ Ideas About Ehlers-Danlos Syndrome Products?!? Way to go, EDS community for sharing info, ideas, and support! I found…
If you have a rare disease, you probably have days when you think: "I wish I had someone to talk to or email back-and-forth with... someone who understands exactly how I…
¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas? Congreso. La FDA. Defensores de los pacientes. Y Venture Philanthropy. Cuando se trata de enfermedades raras, los medicamentos…
Conoce a Amanda! vlog de Amanda (video blog), ShAMANDAgans, le ayuda a mantenerse en contacto con amigos y familiares y compartir su historia. Ella es un ambicioso y alegre estudiante…
Las víctimas de la enfermedad rara y potencialmente mortal angioedema hereditario (AEH) están levantando banderas rojas debido Australia se está quedando atrás en el diagnóstico y tratamiento de la enfermedad.…
When you have a rare disease, your money goes to a lot of different things that people without health problems don't have to cover. Like medicine. Or therapy. Or hospitalizations. Or...…
Having a rare disease sucks, but sometimes it helps to cut your disease down to size mentally--especially if you can't do it physically! And, hey, laughing is better than crying,…
Why Pharma cares more and more about Rare Diseases Congress. The FDA. Patient Advocates. And Venture Philanthropy. When it comes to rare diseases, medicines haven't always been readily available. A…
Sufferers of the rare and potentially life-threatening disease Hereditary angioedema (HAE) are raising red flags because Australia is lagging behind on diagnosing and treating the disease. HAE allows the body's…
Meet Amanda! Amanda’s vlog (video blog), ShAMANDAgans, helps her keep in touch with friends and family and share her story. She’s an ambitious and cheerful graduate student; going to…
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