Following on from #RareDiseasesDay a few weeks ago, I’d like to bring your attention to a group called IgG4ward, and IgG4 awareness day on 4th April. They do an incredible amount of advocacy for this rare disease.
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#rarediseasesday
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(Post 7)
I still hear internal noises that I shouldn’t hear, such as my eyes moving, as I have thinning of the other superior semicircular canal. But I have my life back, and intend to make the most of it.
#rarediseasesday #scds
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#RareDiseasesDay #ResearchMatters
Medical research matters. Research on #RareDiseases has led to many scientific and medical breakthroughs that have benefitted all of us
bsky.app/profile/disc...
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Barcelona impulsa una revolución científica para acortar la odisea diagnóstica de las enfermedades raras #RareDiseasesDay #DiaMundialEnfermedadesRaras #diamundialdelasenfermedadesraras www.nationalgeographic.com.es/ciencia/rema...
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Selfie of me, I'm sitting on a wooden bench with a pale yellow wall behind me, I'm looking slightly up at the camera and smiling. I'm wearing blue jean shorts, a red low cut top, red round sunglasses, gold hoop earrings and a gold necklace. You can see the scar on my chest running down the middle of my chest.
I think I count for #RareDiseasesDay! Hi I have Tetralogy of Fallot, a chronic heart condition I was born with. I've had open heart surgery twice. I'm proud to still be here and going strong! Photo from 2022.
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Muy orgullosa de formar parte de este equipazo de investigación que estudia una enfermedad ultrarrara #Laforadisease, para dilucidar sus mecanismos moleculares y encontrar un tratamiento. #FEDER_ONG @rarascsic.bskysocial @ibv-csic.bsky social #diamundialdelasenfermedadesraras #rarediseasesday
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el apoyo a las familias afectadas y el impulso a la investigación científica que permita mejorar el diagnóstico, el tratamiento y la calidad de vida de quienes conviven con estas patologías. #diamundialenfermedadesraras #rarediseasesday
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💜CNAG Lights Up For Rare
Tomorrow it's #RareDiseasesDay, a day to raise awareness of the 300 million people living with rare diseases worldwide
At CNAG, we improve diagnosis through genomics and help families find answers
#LightUpForRare @rarediseaseday.bsky.social @erdera.bsky.social #rarediseases
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🔬 February spotlight: Dr Myrona Goutaki, co-Chair of the BEAT-PCD CRC.
Ahead of #RareDiseasesDay (28 Feb), she emphasises why patient voices must shape rare disease research and the need for more accessible resources.
🔗: europeanlung.org/en/news-and-blog/convers...
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© Cureus Publishing Beyond Open Access • Cureus. 2022 Jan 19;14(1):e21418. doi: 10.7759/cureus.21418 C Sudden Sensorineural Hearing Loss and Why It's an Emergency Wynnie W Jung 1, Carl Hoeger| 2,3, Editors: Alexander Muacevic, John R Adler • Author information • Article notes • Copyright and License information PMCID: PMC8855894 PMID: 35198323 Abstract This review shows the importance of sudden sensorineural hearing loss (SSNHL) as a significant cause of hearing loss that often goes under-recognized, especially by primary care physicians. Contrasted with conductive hearing loss, SSNHL involves inner ear damage. This work reviewed the diagnostic methods and treatments of SSNHL in the U.S. and ^ including treatmont@icna.kie.im Feedback
It’s #RareDiseasesDay. Sudden sensorineural hearing loss is mine. Woke up Deaf in one ear without warning. Your ability to communicate easily with the world vanishes overnight. Full story at noisysilence.ie Help fund hearing loss research: noisysilence.ie/2024/10/19/f... #RareDiseasesDay2025
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This #RareDiseasesDay, check out our #sciencepodcast episode with Dr. Sessions Cole where we dive into the diagnostic journey for people with #rarediseases
dnapodcast.com/episodes/202...
#genetics
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The #FIRENDO (National Network for Rare Endocrine Diseases ) members are active to celebrate & support the #RareDiseasesDay 👇👇👇
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This #RareDiseasesDay, we’re spotlighting Prof Jane Davies from @imperialnhli.bsky.social, whose research is transforming #CysticFibrosis treatment and bringing hope to those with rare conditions.
"I really envisage a different future for today’s children..." www.imperial.ac.uk/stories/ref2...
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Sign out open letter on Rare Diseases Day. We demand affordable access to lifesaving cystic fibrosis medicines.
1/ On #RareDiseasesDay, sign our open letter demanding affordable access to lifesaving #CF meds.
A @who.int resolution on rare diseases is being negotiated, but leaked drafts FAIL to protect patients' right to affordable medicines. 🧵...
Sign: bit.ly/4kgnqyv
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With an estimated 3.5 million people in the UK living with a #raredisease, research is critical.
Our researchers have identified disease-causing genetic variants not picked up by regular testing oxfordbrc.nihr.ac.uk/hiding-in-pl...
#RareDiseasesDay
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Proud to be a partner with ERDERA in this journey to spread awareness regarding rare diseases and improve the overall rare disease research landscape in Europe and beyond 💪
On this #RareDiseasesDay, take a moment to repost this! Together, we can make the lives of millions healthier and happier 💫
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Today is #RareDiseasesDay
If you can, take a moment to reflect.
You don’t expect it until it happens to you.
There are many out there carrying an #InvisibleIllness, or sometimes a not so invisible one.
Take the time to be kind to your fellow human.
You do not know what they are carrying.
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New video is live. Introduction to takayasu’s from a #takayasus patient
youtu.be/gatFzbecKq4?...
#raredisease #chronicillness #rarediseasesday
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Definitely my favourite slide from the evening! 👏🏻🏴 By Dr. Jamie Duckers & Rhiannon Edwards from the #Wales National Rare Diseases Implementation Network
‘Wales is small enough to do great things’ 🌟
#RareDiseasesDay #2025 #GeneticAllianceUK
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Over 7,000 rare diseases affect more than 30 million people in the United States. Register to attend #RareDiseasesDay to learn about and engage in dialogue around rare diseases! https://buff.ly/4jhov8E
#NCATS, #NIH, #FDA, #raredisease
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