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Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 15/07/2025

Catch up on @giuliabould.bsky.social raising awareness of #AddisonsDisease on BBC's North West Tonight. Giulia who has Addison's speaks about the impact of being rare on treatment & being prepared for emergencies due to limited medical awareness of adrenal crisis & time-critical treatment req (1/3)

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 04/05/2025

Beautiful sunset this evening! ☀️

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Endocrine Society @endocrinesociety.bsky.social · 07/04/2025

During #AdrenalDay2025, check out our latest research and clinical resources for addressing #adrenaldisease public health challenges: bit.ly/3x8YVxf @endosocjournals.bsky.social @nadfadrenal.bsky.social

bit.ly

Adrenal Health and Disease

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Josh Marshall @joshtpm.bsky.social · 07/04/2025

You may be fearing your 401k is no longer enough for you to retire. But with all the cuts to NIH and Medicare you also won't live as long. So the policies are integrated.

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 01/04/2025

I am so humbled by the generosity of so many that purchased wristbands or made donations to help me raise money for Adrenal Disease Awareness on Rare Disease Day. This truly means the world to me. Raising awareness about Rare Diseases and helping so many people! 🥰❤️

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Addison's Disease Self Help Group (ADSHG) @addisonsdisease.bsky.social · 31/03/2025

President John F. Kennedy has been back in the news following the release of thousands of declassified files. 🩺 But did you know he had Addison's disease? This is why #AddisonsDiseaseDay is celebrated on 29 May. Read more about JFK & Addison's ⤵️ www.addisonsdisease.org.uk/famous-lives...

addisonsdisease.org.uk

Famous Lives - John F. Kennedy

President John F. Kennedy was diagnosed with Addison's in September 1947 at the age of 30 years. Whilst president he was portrayed as healthy and vibrant. In reality, he suffered various problems & hi...

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Rachel Issaka, MD, MAS @issakamd.bsky.social · 24/03/2025

An insightful and troubling investigative report by @anguschen.bsky.social on how gov't cuts are impacting cancer centers, researchers, and patients. As a cancer researcher, I can attest that these cuts are indeed devastating and will set back decades of progress. www.statnews.com/2025/03/24/t...

statnews.com

Cancer research, long protected, feels ‘devastating’ effects under Trump

Cancer research has had bipartisan support. But Trump administration budget cuts and delays threaten to reverse progress of recent years, experts say.

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Thanh Neville, MD, MSHS @thanh-neville.bsky.social · 27/03/2025

This is just awful. Year 1 of one of our NIH grants (not DEI-related) ended in January & we still haven't received notice of renewal. We've been working with invisible funds. These cuts are destroying science. This is a situation where it is clear that LESS IS LESS.

wapo.st

RFK Jr. announces big cuts to Department of Health and Human Services

In all, the agency will cut 20,000 positions, half of them by layoffs.

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TRAstonDrs @castltrastondrs.medsky.network · 27/03/2025

Discriminate firings. Terminated grants. Cancelled programmes. The barrage of actions by 🇺🇸 administration has shocked the country’s research community over the past 2 months. Yet, much of it was planned out years in advance & laid out publicly. www.nature.com/articles/d41... @nature.com

nature.com

How Trump is following Project 2025’s radical roadmap to defund science

Much of the Trump administration’s agenda for research is laid out in the 900-plus-page blueprint. Nature read it so you don’t have to.

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Shematologist, MD @shematologist.medsky.social · 27/03/2025

As official communication has not occurred the University of Michigan could still make a different choice. Choose to be on the right side of history. @umichlaw.bsky.social @umichfball.bsky.social @umichlawlib.bsky.social @umichstonecid.bsky.social @iwashyna.bsky.social @ebtapper.bsky.social

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 16/03/2025

#RareDiseaseDay was 2/28/2025! Thank you Governor Whitmer for the Proclamation that 2/28/2025 was Rare Disease Day in Michigan!! ❤️

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 09/03/2025

Today is #internationalwomensday! I’m thankful for all of the incredible women in my life! Women and girls everywhere are shaping the world with their ideas, kindness, courage, and strength. Today and every day, we celebrate their achievements and the road they've paved for future generations! ❤️

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Thanh Neville, MD, MSHS @thanh-neville.bsky.social · 08/03/2025

some more good ones...

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 08/03/2025

Take a listen to my podcast interview about Addison’s disease and Rare Disease Day! 🩷💙💚💜 www.youtube.com/watch?v=Ys-I...

youtube.com

The Wrap – Celebrating Rare Disease Day

YouTube video by Michigan Medicine

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 13/02/2025

February 28, 2025- is Rare Disease Day in Michigan!! 💚🩷💙💜

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 10/02/2025

Rare disease day 2-28-25 🩷💜💚💙

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Fred Wellman @fpwellman.bsky.social · 31/01/2025

She lost her life serving our country and because of the smears by the President her family doesn’t want us to know her name. It’s two weeks and this Administration is the most shameful imaginable. — Army withholds name of Black Hawk helicopter crew in D.C. crash www.npr.org/2025/01/30/n...

npr.org

Army withholds name of Black Hawk helicopter crew in D.C. crash, 2 others identified

A U.S. military official told NPR on Friday that at the request of the family the Army is not going to release the name of the female crew member. The withholding of the name is a highly unusual move.

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Philip Palermo @palermo.bsky.social · 23/01/2025

The kind folks at Rare Disease Day have shared Amelia’s #BattenDisease story, and you can read it at the link below! Rare Disease Day is Feb. 28th and the more awareness we can spread, the better! www.rarediseaseday.org/heroes/ameli...

rarediseaseday.org

Amelia, the CLN1 Warrior! - Rare Disease Day 2025

Our daughter, Amelia, was diagnosed with CLN1 Batten Disease (neuronal ceroid lipofuscinosis) at 2 years old. Batten Disease is a fatal, neurodegenerative disease with no… Continue reading Amelia, the...

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 20/01/2025

Rare Disease Day, 2/28/25! 💙💚💜🩷

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Buitengebieden @buitengebieden.bsky.social · 12/01/2025

Good morning.. 😊

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 04/01/2025

Raising awareness for Rare Disease Day! 2-28-2025, the last day of February every year and celebrated worldwide! Please spread the word to raise awareness! Let’s raise awareness for our patients and our communities!

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Thanh Neville, MD, MSHS @thanh-neville.bsky.social · 04/01/2025

I went to see my patient on #EOLcare & saw that the nurse had encased his hands in warm water-filled gloves, to simulate human touch (his family was not able to be there). Below is a googled picture. This kind of compassion is not taught in school. My heart is full. @3wishesprogram.bsky.social

water-filled gloves encase a hand of a patient who could not have family at the bedside. this image is from google and depicts what was done in some hospitals during the COVID pandemic

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 01/01/2025

Happy New Year! Cheers to an amazing 2025!💫

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Chronic Illness Humor @chronicillness.bsky.social · 30/12/2024

"Just trust your body." Pal, I have an autoimmune disorder. My body is trying to kill me as we speak.

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 29/12/2024

Spent my Christmas week in the hospital with an adrenal crisis. The pain I experience with an adrenal crisis is something I can’t put into words. I am so thankful for the @NADF_Adrenal @NADF_Kalina for providing information for people to reference. 🧵

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 26/12/2024

Not exactly how I envisioned spending my Christmas Eve and Christmas Day but Addison’s disease doesn’t let you choose when an adrenal crisis will happen. This is why I advocate for people living with rare diseases! Merry Christmas everyone! 🎄🎁

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 09/12/2024

This is Addison’s Disease. A very difficult disease to manage day to day and when health care providers do not know how to manage an adrenal crisis, it is life threatening. #addisonsdisease #raredisease #NADF

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 07/12/2024

Onward and upward! You are an unstoppable warrior! Never give up! ✨#rarewarrior #rarediseaseday2025

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Dana Rowland RMSKS 🦋 @rmsksdana.bsky.social · 06/12/2024

Rare Disease Day, is February 28th, 2025. The last day of February every year!! Mark your calendars!!! Wear your stripes, light up for rare, spread the word about Rare Disease Day! 🦓🩷💜💙💚 x.com/rarediseased...

x.com

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Isla Gleeson (She/Her) @islagleeson.bsky.social · 04/12/2024

THE #HCWVSHUNGER 2024 RESULTS ARE IN! 🍎 3rd place: #BladesNBougiesPEEPS with $83,402 👏 2nd place: #DiagnoseAndTreats with $241,594 👏 1st place: #KidVengers with $263,209 👏 Congratulations to our 3rd-time contest winner, #KidVengers, and thank you to everyone who contributed this year!

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Sarah Bernstein, MD @sbernsteinmd.bsky.social · 03/12/2024

Sending extra hugs to anyone who needs them today 💙 You are enough.

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Fumiko Ladd Chino, MD FASCO @fumikochino.bsky.social · 02/12/2024

🥶 It's cold in Chicago! While you're waiting for your morning ☕️ consider donating $5 to CARE! There is x10 match currently and you can walk into #RSNA24 feeling good. Win win. 1️⃣ Donate while in line 2️⃣ Log it on #HCWvsHunger ( #radiology #radSky #radonc team is #DiagnoseAndTreats) 3️⃣ Feed some people

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Jessi Gold, MD MS @drjessigold.bsky.social · 02/12/2024

Get the book for someone for the holidays and send me a receipt and I’ll send u some fun swag too!!

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