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.

Beyond Awareness: What the Rare Disease Community Really Needs

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

#rareadvocacy #rarediseasecommunity #rare360 #rarediseaseday #livingrare #valentinesday

🏕️ 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

🤝 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

💙 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

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

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

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

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

Rare Disease Advisor is in Boston, MA for #WorldOrphanUSA. Follow along for live updates, expert interviews, and our first-ever #RareAdvocacy session!

#RDAatWODC

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

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

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

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

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

Happy New Year!

#happynewyear
#raredisease
#zebrapower
#LivingRare
#rareadvocacy
#kidneydiseasewarrior
#spoonie

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

#seasonsgreetings
#happyholidays
#livingrare
#chronicpain
#insomnia
#rarediseases
#Fibromyalgia
#neuropathy
#kidneydisease
#anemia
#lupus
#ehlersdanlos
#RareAdvocacy

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