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I've made shoes for some of these kids. It's truly an awful condition.

Shout out for Addisons Disease

Godless liberals doing gods work. Love it

There was a great show on CNN called Something's Killing Me hosted by BD Wong - that investigated rare diseases. And of course in true @cnn fashion they killed it. www.cnn.com/shows/someth...

What a stupid and cruel species we are. Money for war but not for health. We deserve to be rounded up by aliens and shot into the sun.

I thought this was about Epstein Barr disease. I was diagnosed in 1998, and it’s been a chronic problem. This virus causes cancer and was being studied until funding was cut by the current administration. How cruel is this?

Thank you for bringing awareness of this horrible disease and your work to cure it.

Talk to BioNTech of germany... they Invented the Pfizer mRNA vaccine and are making world changing strides against all manner of Cancers and other ailments.

Let’s all share this to all . Science does matter!!! We need research for rare diseases,cancer research , Alzheimer’s research and to all . As much as possible it will not involve any animals as much as possible. Prayers to all that are suffering from any disease. Education be free for all. 🕊️🕊️🕊️

There's a huge fundraising weekend in the town where I live, next weekend, that raises money for E.B research. You should come #PearlJam !!! 😭 www.brighterdays.org.au/about-us.html

I watched the documentary on this. What an utterly heart-breaking condition.

He’s just passed away a few days ago..19 April. Extremely sad

Research is critical to help people live through diseases.

Here’s the link to the donation page. give.ebresearch.org/give/335486/...

Dont forget...the trump administration has cut funding multiple areas of research....EB is a painful,horrific, non stop battle for these kids and their families.. Remember this when you vote...If you want to help people, you vote Dem... harm people vote GOP...it has always been so.. DONATE TO EB

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This disease is horrific. I’ve seen it in person.

... Sadly America would rather spend Billions for War ...

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💔💔💔💔💔💔💔 My sympathies for the loss of little Oscar.

I am so sorry for your loss. 🧡

I’m so sorry for your loss 💔

He was beautiful. I’m so sorry.

My condolences

😢💔👼🙏 There are no words.

There's a link to the charity in the post, it's a very painful condition. The Debra charity do an amazing job. I don't know anyone with EB but I would rather help a small "unfashionable" charity. Whenever I see these poor kids I just think this shouldn't be happening.

It's in the video, and also the post links to a website that explains it. You have been given all of the tools necessary.

Y'all don't even be reading the other comments anymore. You just rush to put yours out there. Embarassing

I watched the Netflix documentary, I had never heard of EB. These children are so brave.. my heart was heavy but proud of all you are doing to bring awareness. Thank you!

I firmly believe that given enough time, resources, human imagination, cooperation and will, that anything can be accomplished. It's why sci-fi is often more of a mental preparatory survival guide for the future than fiction. It literally predicts things that come to pass. Well, and The Simpsons.

I got the email from Blenko glass about the suncatcher to raise funds for EB research. I love supporting a West Virginia business while also helping to advance medical science! blenko.com/collections/...

rarediseases.org/rare-disease...

Good on you

Common viruses (especially Covid) can cause rare diseases. Stay boosted and wear masks (N95s). archive.is/qBbZJ

Thank you so much for giving this exposure, from the bottom of my triple rare disease heart.

Is distributed AI medical research playing any part in this? @rosettacommons.bsky.social @uwproteindesign.bsky.social @foldingathome.org @curecoin.bsky.social @gridcoin.bsky.social @banano.bsky.social

Even hugs can hurt 🥺

I just watched the documentary about this and bawled my eyes out.

It's hard to believe there is a God that allows children to suffer like this.

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Thanks PJ. My daughter has a rare disease (though not life threatening one.). Appreciate you looking out for kids first.

Damn, Eddie. My rock and roll tastes pre-date PJ by a couple of decades. But, seeing this PSA and watching Song Sung Blue (both), I'm just going to say it: you are the greatest rocker I've ever seen (and I've seen quite a few). Thank you for being you.

Everyone’s favorite day of the year!

по буржуйски бакланят НЕ все понятно... Очень жаль девочку ((( я так понял болезнь... Дай Боженька ей здоровья - хороших врачей и денежку на лечение...

I am in tears at this, especially today. Knowing we are spending billions to blow people and kids up when that money could be spent on helping children like this lovely little angel. I have no words. I just wish our society would finally stop the carnage and help the kids here who need the help.

The most courageous young lady I ever had the privilege to treat had EB - she retained her sense of humour and love for life despite being in constant pain, significantly disabled and passed away in her early 20’s - just a horrible disease.

How about the health insurance companies?

This disease is awful, and I hope this also raises conversation about the state of the US health care & research system. That being said, this might be the first time as a tailend GenXer that I understood every word Eddie Vedder said. I'm gonna need a moment.

Sounds terrible. I donated.

Rare diseases are always underfunded. Because they are rare. This group is working on solutions to a large number of rare diseases. Donate if you can.

She's so beautiful. ❤️

Rare Disease advocate here, too.

Thanks, guys. Love yous 💜

Thanks for sharing. I have not heard of this.

Sad that in the USA, science is looked at through a lens of conspiracy theories. Stupidity and paranoia will kill us. We need to ensure research is funded.

Thank you. My child suffers from Friedreich's ataxia, another extremely rare disease. #RareDiseaseDay

Thank you for bringing this to light.

Today puts us back in every possible way.

Ehlers-Danlos is helped by this collagen disorder research! I encourage all my eds people to support EB research!! #RareDiseaseDay #ItsAMatterOfTime

Poor little children.🩷🧡💙🩵

So sad even With all the horrible things in the world atm it’s good to be aware that Medical and biological science is making the most incredible breakthroughs I

🎯 ❤️‍🩹

Keep fighting for the research people.

Then we need to start by removing RFK Jr.

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I really wish they could find a cure for this disease. It's one of the worst

too much heartbreak in this world.

Thank you for sharing! 🙏🏼