##RareDiseaseCommunity
LightNews LightNews
alsnewstoday.bsky.social
You bring something unique to the world that ALS cannot erase.

#RareDiseaseCommunity
October 3, 2026 at 8:30 PM
broderj2.bsky.social
Today I stand strong together and celebrate #RareDiseaseDay with the #RareDiseaseCommunity.

Rare Disease Day means bringing attention to Immune Thrombocytopenia (ITP) and all rare diseases, which often go unnoticed.

@ITPsupport.org.co.uk
February 28, 2025 at 11:57 AM
angioedemanews.bsky.social
Explore the full range of angioedema treatments: https://bit.ly/3He43qS

These range from medications to home remedies. Plus, find strategies to manage and prevent swelling.

#AngioedemaCare #HAEAwareness #PatientSupport #RareDiseaseCommunity #HealthTips #AngioedemaNews #Bionews
October 1, 2026 at 11:31 PM
alsnewstoday.bsky.social
How you show up today is shaped by things most people never see.

#RareDiseaseCommunity
October 1, 2026 at 5:31 PM
buktom.bsky.social
28.02.2026
#RareDiseaseDay
#ShowYourStripes
#TagDerSeltenenErkrankungen
#RareDiseaseCommunity
#SeltenVereint
Eine zügige Einführung der ICD-11 würde auch hier sehr helfen! / A swift introduction of the ICD-11 would be very helpful here as well!
Info: kopfmahlen.blogspot.com/2025/06/star...
STARTSEITE ICD-11 / PETITION / Bundestag / WHO - PORTAL
Infoblog zur ICD-11, Gesundheit, Petition
kopfmahlen.blogspot.com
February 28, 2026 at 4:17 PM
hdyofeed.bsky.social
28 February is Rare Disease Day 💜

Young people and families affected by Huntington’s disease are part of this global community, and raising awareness helps ensure no one faces it alone.

Join us! 💙💚💗

#RareDiseaseDay #HDYO #HuntingtonsDisease #RareDiseaseCommunity
February 24, 2026 at 7:17 PM
rd-rn.bsky.social
We are the new inclusive, supportive networking hub for everyone interested in rare disease research. Our patient-centred approach is turning research on its head, where we want to be part of the future of rare disease research.

Find us at: rd-rn.org

#RareDiseaseResearch #RareDiseaseCommunity
January 23, 2025 at 1:11 PM
rarediseaseday.bsky.social
⏰ Only 10 days to go until #RareDiseaseDay!
Get ready to light up, share your colours, and make the rare visible.

Discover events, toolkits & ways to get involved: https://go.rarediseaseday.org/RDD

Let’s make this year more than you can imagine. 💪

#LightUpForRare #RareDiseaseCommunity
“Days until Rare Disease Day: 10.” The number “10” is large and white with yellow spark lines around it. The background is a blue and purple gradient, with the Rare Disease Day logo at the bottom and the hashtag “#RareDiseaseDay.”
February 18, 2026 at 1:00 PM
rarediseaseday.bsky.social
🌍 What’s happening for #RareDiseaseDay near you?

Fun runs, conferences & more, our community is celebrating across the world!

👉 It’s not too late to add your event to the map or find one nearby: https://go.rarediseaseday.org/find

#RareDiseaseCommunity #GetInvolved
“What’s Occurring... Near You!” A blue and purple gradient background with a world map and several colourful location pins placed across different continents.
February 15, 2026 at 1:00 PM
rarediseaseday.bsky.social
💜 For many living with rare diseases, diagnosis takes years, or never comes.
Nellie, Monique and many others shared their unique diagnostic journeys, you can too!

👉 Read more stories here: https://go.rarediseaseday.org/heroes

#EquityInDiagnostics #RareDiseaseCommunity
“The Diagnostic Journey... The Importance of Equity in Reaching a Diagnosis.” Nellie making a heart shape with her hands, Killian in sunglasses and a hat to her right, Monique with pink hair and tattoos. The background is a purple and teal gradient. “Monique’s Journey – Fabry Disease”. “ I was…showing symptoms when I was 6, but I wasn’t diagnosed until I was 15. Many doubted my suffering. But the pain was real. I was finally diagnosed with Fabry disease... It was a relief.” Monique with pink hair and tattoos smiles softly; purple and blue background with a pink button reading “Read the full story.” “Nellie’s Journey – Undiagnosed”. “Being undiagnosed affects everything... there’s nothing to write down on forms where it says ‘diagnosis. She has a list of problems...but she loves life...We as a family have accepted...Nellie may never receive a diagnosis” Young girl smiling and forming a heart with her hands; purple background with pink “Read the full story” button. “Equity in Diagnosis.” “Killian: It took eleven years before I was diagnosed with Episodic Ataxia Type 2 (EA2).” “Shanita: I have myasthenia gravis. I was undiagnosed for almost 14 years.” “Emerald: I was brushed off by numerous male doctors who attributed my abdominal pain to stress.”
January 7, 2026 at 1:00 PM
womeninneurouk.bsky.social
Awareness leads to action. Action leads to change.
#RareDiseaseDay #RareDiseaseCommunity #WiNUK
Overview of Cure Rare Disease’s work in creating personalised gene therapies for rare genetic disorders to help transform the landscape of treatment options. WiNUK logo is also shown. Concluding slide describing how by raising awareness and supporting research we can ensure that rare disease patients get the support and care that they deserve. References for content used within this infographic covering information from global genes, rare disease foundation, for example. WiNUK logo is also shown.
February 28, 2026 at 9:32 PM
acureinsight.bsky.social
💙 Did you know?
ACIS started the 1st Zoom support group for OM in March 2020 — and it’s still going strong every Tuesday, led by amazing volunteers. 👁️✨Join us- https://us02web.zoom.us/j/780974096<a href="/hashtag/success" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#success

#ACureInSight #OcularMelanoma #SupportGroup #PatientSupport #RareDiseaseCommunity
July 20, 2026 at 2:02 PM
caprin1-foundation.bsky.social
You are not alone. Join a global network of families, advocates and researchers working to understand CAPRIN1-related conditions.

💙 Connect, learn and grow with us.

👉 Sign up at caprin1foundation.org/join-our-com...

#CAPRIN1 #RareDiseaseCommunity #Genetics #SupportFamilies #JoinUs
Image of a man placing his hand in a supportive way on another man's shoulder. The text reads "We're here for you!"
November 19, 2025 at 10:00 AM
cfnewstoday.bsky.social
Join the Discussion: https://bit.ly/4rErM6r

#CysticFibrosis #CFCommunity #CFNewsToday #Bionews #CysticFibrosisDiagnosis #RareDiseaseCommunity
June 1, 2026 at 2:45 AM
alsnewstoday.bsky.social
One day, I hope Netflix tells more rare disease stories. 🎬💙

Until then, we’ll keep sharing ours here. Connect with others living with a rare disease: https://bit.ly/3RukYe3

#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
July 23, 2026 at 3:34 PM
alsnewstoday.bsky.social
Read about ALS fatigue: https://bit.ly/3WJuQQh

From pacing your day to adjusting routines, small changes can help preserve energy and peace of mind.

#ALSNewsToday #ALSCommunity #ALS #AmyotrophicLateralSclerosis #FatigueAwareness #ALSSymptoms #ALSResearch #RareDiseaseCommunity #Bionews
April 10, 2026 at 4:05 PM
alsnewstoday.bsky.social
You bring something unique to the world that ALS cannot erase.

#RareDiseaseCommunity
February 20, 2026 at 9:30 PM
rareadvocacy.bsky.social
Beyond Awareness: What the Rare Disease Community Really Needs

Learn more at:
www.rare360.life/post/beyond-...

#rareadvocacy #rarediseasecommunity #rare360 #rarediseaseday #livingrare #valentinesday
Beyond Awareness: What the Rare Disease Community Really Needs is written across the top center of a watercolored backdrop of purple, pink and blue blend together. Embedded into the background is a DNA helix, a faint image of the back facing side of a group of people and a heart beat symbol. Underneath the title, are two awareness ribbons side by side: one ribbon a rainbow zebra theme and the other a black and white zebra theme.
February 14, 2026 at 2:24 PM
rarekidscan.bsky.social
August 12 is #InternationalYouthDay! This year, we’re celebrating Simone, a dedicated #YouthPartner with #RareKidsCAN who’s making a difference in the #RareDiseaseCommunity. Discover Simone’s journey and how she became involved with our work: tinyurl.com/nhhhtchu

#LivingWithRare #PatientAdvocacy
August 12, 2025 at 11:44 PM
rarediseaseadvisor.bsky.social
An atmosphere of grave concern is gripping the #RareDiseaseCommunity as massive budget cuts & layoffs at the NIH endanger tens of millions of dollars in grants to study everything from Duchenne muscular dystrophy to idiopathic pulmonary fibrosis @mda.org 🧪♿
www.rarediseaseadvisor.com/features/nih...
Rare Disease Researchers Warn NIH Budget Cuts Could Threaten Progress and Endanger Lives
With a $48 billion annual budget, the US National Institutes of Health is the world’s largest public funder of biomedical research.
www.rarediseaseadvisor.com
April 3, 2025 at 3:14 PM
rarediseaseday.bsky.social
💜 For people living with a rare disease, equity means recognising unique needs & breaking down barriers — so everyone can fully participate in life, education & work.

⚖️ Equity ≠ equality. It’s fairness in action.

https://go.rarediseaseday.org/equity
#EquityForRare #RareDiseaseCommunity
“Equity means fair access to diagnosis, treatment, care and opportunities. Rare Disease Day – Feb 28, 2026.” The Rare Disease Day logo (a multicoloured hand) appears in the upper left corner. The background is a smooth blue and purple gradient. Equality, three people with different heights are stood on the same size box and can see the football game at various quality. Equity, all three people have different size boxes to stand on giving them an equal viewpoint to watch the football game.
January 13, 2026 at 1:00 PM
amcsupport.bsky.social
21st Annual AMCSI Conference is coming up 💙

Real connections, shared experiences, & time with people who truly get it.

To register & learn more, check out the links in the comments.

#AMCOH26 #AMC #Arthrogryposis #RareDiseaseCommunity #DisabilityAwareness
Attendees hugging at the 20th Annual AMCSI Conference in Norfolk, VA. Overlay text reads “21st Annual AMCSI Conference, Columbus, Ohio, July 1–4, 2026” and “General Registration – Register Today.” In the bottom right are the FB, IG, BlueSky, TikTok, YouTube & X logos, with @AMCSUPPORT on the bottom left & the hashtag #AMCOH26 on the bottom right, both in white. Below that is the professional guest speakers link https://amcsupport.org/21st-annual-amcsi-conference/ to learn more about getting involved. AMC conference, AMCSI conference 2026, Arthrogryposis event, AMC condition awareness, AMC community gathering, disability support event, AMC awareness, medical conference USA
April 23, 2026 at 2:40 PM
amcsupport.bsky.social
Rare Disease Day is 2/28/2026 🦓

AMC is not only our story. There is power in joined voices.

Support. Donate. Share.
🔗 amcsupport.org

Learn more
🔗 www.rarediseaseday.org

#RareDiseaseDay #AMCSI #Arthrogryposis #RareDiseaseCommunity #AMCStrong
Promotional graphic for Rare Disease Day 2026 featuring a large blue awareness ribbon on a teal background with the AMCSI logo at the top. Bold yellow and white text reads, “AMC It’s Not Only Our Story… There is power in joined voices.” Key themes appear in bright colors: Awareness, Advocacy, Research, Hope. The RareDiseaseDay.org logo with multicolored hands is displayed alongside the date 2/28/2026. The NORD National Organization for Rare Disorders logo appears at the bottom, along with AMCSI social media handle @AMCSUPPORT and hashtags #AMCSI and #RareDiseaseDay. AMCSI Rare Disease Day 2026 graphic highlighting AMC awareness, advocacy, research, and hope, featuring the blue awareness ribbon, RareDiseaseDay.org branding, and partnership with NORD. Promotional graphic for Rare Disease Day 2026 featuring a large blue awareness ribbon on a teal background with the AMCSI logo at the top. Bold yellow and white text reads, “AMC It’s Not Only Our Story… There is power in joined voices.” Key themes appear in bright colors: Awareness, Advocacy, Research, Hope. The RareDiseaseDay.org logo with multicolored hands is displayed alongside the date 2/28/2026. The NORD National Organization for Rare Disorders logo appears at the bottom, along with AMCSI social media handle @AMCSUPPORT and hashtags #AMCSI and #RareDiseaseDay. AMCSI Rare Disease Day 2026 graphic highlighting AMC awareness, advocacy, research, and hope, featuring the blue awareness ribbon, RareDiseaseDay.org branding, and partnership with NORD. Promotional graphic for Rare Disease Day 2026 featuring a large blue awareness ribbon on a teal background with the AMCSI logo at the top. Bold yellow and white text reads, “AMC It’s Not Only Our Story… There is power in joined voices.” Key themes appear in bright colors: Awareness, Advocacy, Research, Hope. The RareDiseaseDay.org logo with multicolored hands is displayed alongside the date 2/28/2026. The NORD National Organization for Rare Disorders logo appears at the bottom, along with AMCSI social media handle @AMCSUPPORT and hashtags #AMCSI and #RareDiseaseDay. AMCSI Rare Disease Day 2026 graphic highlighting AMC awareness, advocacy, research, and hope, featuring the blue awareness ribbon, RareDiseaseDay.org branding, and partnership with NORD.
February 28, 2026 at 4:26 PM
alsnewstoday.bsky.social
Your feelings are valid and you are not alone!

Click the link to join the community: https://bit.ly/4yQajL5

#RareDisease #RareDiseaseCommunity #ChronicIllness #Disability #Bionews
September 10, 2026 at 4:30 PM
angioedemanews.bsky.social
Emotional health matters! https://bit.ly/4mIIZZV

Explore ways to support your mental well-being while living with HAE.

#MentalHealth #EmotionalWellness #HAESupport #SelfCare #RareDiseaseCommunity #AngioedemaNews #Bionews
September 6, 2026 at 11:31 PM