LightNews — News, ranked by scholars

@rareadvocacy.bsky.social

'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

Rare Advocacy Movement

@rareadvocacy.bsky.social

Living with #rarediseases often brings challenges that others might not understand, especially when symptoms like fatigue don’t have an obvious cause.

For many #LivingRare, #DryEyeSyndrome is a surprising contributor to daily fatigue.

www.rare360.life/post/battlin...

November 18, 2024 at 6:55 PM

CamRARE (Cambridge Rare Disease Network)

@camrare.bsky.social

If you are near Cambridge UK, come to our #LivingRare event at the DISC on 27 Feb - perfect for anyone who works on the Cambridge Biomedical Campus or at Addenbrookes, Papworth or Rosie Hospitals!
camrarerarediseaseday2026.eventbrite.co.uk

February 19, 2026 at 3:23 PM

Rare Advocacy Movement

@rareadvocacy.bsky.social

Why Should #RareDisease Patients and Caregivers Care to Participate in #MarketResearch Studies?

www.rare360.life/post/your-in...

#C3G
#C3GN
#ICMPGN
#lupus
#PNH
#rarekidneydisease
#chronickidneydisease
#ourlivesmatter
#nothingaboutuswithoutus
#livingRare

December 4, 2024 at 5:47 PM

Rare Advocacy Movement

@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

Rare Advocacy Movement

@rareadvocacy.bsky.social

Tragic deaths in recent #genetherapy trials for #Duchenne Muscular Dystrophy (#DMD) and Limb-Girdle #MuscularDystrophy (#LGMD) have left many in the #raredisease community shaken.

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

#Rare360 #LivingRare

July 23, 2025 at 8:10 PM

Rare Advocacy Movement

@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

Rare Advocacy Movement

@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

Rare Advocacy Movement

@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

Rare Advocacy Movement

@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

Rare Advocacy Movement

@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

Rare Advocacy Movement

@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

Rare Advocacy Movement

@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