Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Doesn't apply to me, because I'd rather die like this than have a Facebook account.
Doesn't apply to me, because I'd rather die like this than have a Facebook account.
Pretty frigging awesome though!
Perhaps Ron Davis can find the right person to have a little chat to??As part of the investment, a $600 million research center in San Francisco called the Biohub will be built in partnership with Stanford, the University of California, and Berkeley. Neurobiologist Cori Bargmann will become the Chan Zuckerberg Initiative's new president of science.
I can't read the article now. Maybe what I write below is already being done.
Off the top of my head @JaimeS, @JenB, @Ben Howell, @Rose49, @ScottTriGuy, @AndyPR .... (and also for everyone):
I can't read the article now. Maybe what I write below is already being done.
Off the top of my head @JaimeS, @JenB, @Ben Howell, @Rose49, @ScottTriGuy, @AndyPR .... (and also for everyone):
I was wondering is anyone reaching out to them for funding for us: for OMI, Lipkin and our other researchers? Have something well prepared to make our and the research case, maybe something from OMI, Lipkin... one of the doctors if that would help more.
I've been thinking there must be some ways to reach more Silicon Valley companies and attract them (find something that would be appealing to each company or person) for donations and funding for us.
Does anyone know any professional fund raisers that might want to volunteer to help us? Or maybe we can find one? Perhaps even one that is connected in Silicon Valley!
As always, thank you everyone for your advocacy and work to try to change this and make it better.
I would not consider ME an orphan disease.
An orphan disease is defined as a condition that affects fewer than 200,000 people nationwide. This includes diseases as familiar as cystic fibrosis, Lou Gehrig disease, and Tourette's syndrome, and as unfamiliar as Hamburger disease, Job syndrome, and acromegaly, or "gigantism."
"200,000 people nationwide"
What nation are you refferring to ?
A rare disease or disorder is defined in the U.S. as one affecting fewer than 200,000 Americans. There are more than 6,000 known rare diseases, and it is estimated that about 25 million Americans are affected by them (as of 2002).