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

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

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

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

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

Un nuevo estudio proporciona información innovadora sobre por qué algunas personas se mantienen libres de síntomas a pesar de tener genes de la enfermedad. Para saber más, visita:

www.rare360.life/post/why-som...

#Rare360

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

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