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'tis the season to rest. Enjoy. Happy Holidays.

#seasonsgreetings
#happyholidays
#livingrare
#chronicpain
#insomnia
#rarediseases
#Fibromyalgia
#neuropathy
#kidneydisease
#anemia
#lupus
#ehlersdanlos
#RareAdvocacy
December 24, 2024 at 2:24 PM
rarediseaseadvisor.bsky.social
Rare Disease Advisor is in Boston, MA for #WorldOrphanUSA. Follow along for live updates, expert interviews, and our first-ever #RareAdvocacy session!

#RDAatWODC
April 23, 2025 at 2:41 PM
rarediseaseadvisor.bsky.social
💙 What does it mean to be #MDAStrong?

Strength is resilience. Strength is progress. Strength is community.

Learn more about @MDA.org: https://bit.ly/47gnMR3

#RareAdvocacySpotlight #RareDisease #RareAdvocacy #MuscularDystrophyAssociation #RareSky
October 15, 2025 at 6:58 PM
rarediseaseadvisor.bsky.social
🤝 Connection & Community

The @mda.org brings together the neuromuscular community—locally and virtually—to share support, resources, and hope.

Learn more: https://bit.ly/47gnMR3

#RareAdvocacySpotlight #RareDisease #RareAdvocacy #MDAStrong #MuscularDystrophyAssociation #RareSky
October 15, 2025 at 7:55 PM
rarediseaseadvisor.bsky.social
🏕️ A Week That Changes Lives

Discover how the @mda.org’s summer camp empowers those with neuromuscular conditions and how you can get involved.

Learn more: https://bit.ly/47gnMR3

#RareAdvocacySpotlight #RareDisease #RareAdvocacy #MDAStrong #MuscularDystrophyAssociation #RareSky
October 15, 2025 at 8:50 PM
rareadvocacy.bsky.social
Breakthrough Discovery Uncovers a New Genetic Link to Autism Spectrum Disorder

Visit www.Rare360.life to learn more.

Direct Link: www.rare360.life/post/a-new-g...

#Rare360 #LivingRare #Autism #Rarediseases #GeneticResearch #Ableism #RareAdvocacy
January 21, 2025 at 5:57 PM
rareadvocacy.bsky.social
Many people in the #raredisease community utilize #herbalremedies to get them through the colder #winter months.

Search “Winter Wellness Guide” at www.Rare360.life to learn more.

Direct link: www.rare360.life/post/winter-...

#LivingRare #RareAdvocacy #rare360 #rarediseases #chronicillness
January 19, 2025 at 11:23 PM
rareadvocacy.bsky.social
A new study provides groundbreaking insights into why some people stay symptom-free despite having disease genes. Visit www.Rare360.life to learn more.

Direct Link: www.rare360.life/post/why-som...

#Rare360 #LivingRare #raredisease #Rarediseases #GeneticResearch #LivingRare #RareAdvocacy
January 22, 2025 at 6:09 PM
rareadvocacy.bsky.social
A new #healthcare study uncovers how systemic barriers and interpersonal #ableism undermine the quality and effectiveness of #mentalhealth care for individuals with #disabilities.

Visit www.Rare360.life to learn more.

Direct Link: www.rare360.life/post/pervasi...

#rareadvocacy #rarediseases
January 20, 2025 at 3:25 PM
rareadvocacy.bsky.social
Genetic Data for Sale? The Ethical Dilemma of 23andMe’s Financial Struggles

As 23andMe faces financial challenges, questions arise about the fate of the vast genetic database it has collected from millions of users.

More at www.rare360.life/post/genetic...

#RareAdvocacy
#rarediseases
#ancestry
December 3, 2024 at 5:05 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
rareadvocacy.bsky.social
The Emotional Reality of Rare Disease Patients: How Medical Gaslighting Extends Beyond Healthcare

Learn more at
www.rare360.life/post/the-emo...

#mentalhealthforrare #mentalhealth #rareadvocacy #raredisease #medicalPTSD #medicalgaslighting
The Emotional Reality of Rare Disease Patients: How Medical Gaslighting Extends Beyond Healthcare
For many people living with a rare disease, the hardest part is not always the physical symptoms; it is the emotional weight of constantly feeling unheard, misunderstood, or dismissed.
www.rare360.life
June 23, 2026 at 4:17 PM
rareadvocacy.bsky.social
The economic burden of #rarediseases is staggering. In the United States, managing just 379 rare diseases in 2019 resulted in a total cost of $997 billion.

Learn more at www.rare360.life/post/the-eco...

#rare360 #medicalbills #rareadvocacy #financialstrain #disability #caregiving
September 4, 2025 at 12:14 PM
rareadvocacy.bsky.social
For the global rare disease community, escalating climate extremes present a unique and growing threat.

Learn more at www.rare360.life/post/why-rar...

#rare360 #raredisease #livingrare #rareadvocacy #climatechange #climatecrisis
August 29, 2025 at 5:31 PM
rareadvocacy.bsky.social
Did you know the #OrphanDrugAct (#ODA) has led to over 800 #raredisease treatments? But many challenges remain in access, affordability, and continued research for rare disease communities.

Learn more at www.rare360.life/post/inside-...

#rare360 #rareadvocacy #LivingRare
July 21, 2025 at 6:11 PM
rareadvocacy.bsky.social
In a move that's sparked both intrigue & alarm across the medical industry, Montana has taken a radical leap in the world of "Right to Try" legislation.

Read more at www.rare360.life/post/montana...

#rare360
#rarediseases
#LivingRare
#rareadvocacy
#Righttotry
July 11, 2025 at 6:51 PM
rareadvocacy.bsky.social
Learn more about the Rare360 program's efforts to repair trust and support community-based advocacy through a conversation with Rashmi Jain, Rare360's Executive Director:

www.rare360.life/post/repairi...

#rare360
#LivingRare
#rarediseases
#marketresearch
#rareadvocacy
#thoughtleadership
January 23, 2025 at 4:17 PM
rareadvocacy.bsky.social
Happy New Year!

#happynewyear
#raredisease
#zebrapower
#LivingRare
#rareadvocacy
#kidneydiseasewarrior
#spoonie
January 1, 2025 at 6:31 AM