@raregivers

Raregivers provides emotional support for caregivers, patients and professionals living with rare, chronic and complex diseases. #Raregivers100

[RARE Revolution Magazine® @RareRevolutionM]

In the world of rare, chronic and complex diseases, there are often more questions than answers and the toll can be profound. Families often face relentless cycles of anxiety and fear, all of which can be deeply isolating. @raregivers believes that, for as many as one in ten families living with a rare genetic disease, the burden is not just physical—it is deeply emotional. To address this, Crisis Text Line has announced an important partnership with the Raregivers Coalition, a global network dedicated to the mental and emotional health of patients, caregivers, and healthcare professionals. This important collaboration aims to ensure that no one in the rare disease community has to face their darkest moments alone. Learn more here: https://t.co/40zkv0eXJU

#RareDisease #RareLSDs #RARELysosomal #Lysosomal #LysosomalDisorder

[RARE Revolution Magazine® @RareRevolutionM]

Stories have the power to make the invisible visible. 💛
Phyllis Barrett lost three sons — David, Randy, and Jared — to Hunter syndrome. She shares her story of grief, genetic guilt, and decades of caregiving with no roadmap and no support.
And then — community found her.
Read her full story in @rarerevolutionmag → https://t.co/gNiuICzRO0 | @raregivers
Need support? Text RARE to 741741 (EN) | RARAS to 741741 (ES) via @CrisisTextLine
#TheRareTruth #Raregivers #RareDisease #CaregiverStories #MentalHealthAwarenessMonth

[RARE Revolution Magazine® @RareRevolutionM]

Rare disease doesn't just affect the body — it changes how we see ourselves.
We sat down with actor & advocate @thesamhumphrey to talk mental health, faith, and what it truly means to live rare. 💙
When life gets medical, people get emotional. And those emotions deserve to be seen.
Read the full story → https://t.co/GuDGLIQa9S
#MentalHealthAwarenessMonth #TheRareTruth #Raregivers #RareDisease #SamHumphrey
@raregivers

[RARE Revolution Magazine® @RareRevolutionM]

Introducing the #Raregivers100 — 100 extraordinary people across 10 categories reshaping the emotional experience of complex medical care.
Advocates. Artists. Activists. Healthcare professionals. Changemakers.
Each one making caregiving more visible, humane, and sustainable.
Because when life gets medical, people get emotional. It's time we recognize the ones carrying that weight.
Meet the Raregivers 100 → https://t.co/GuDGLIQa9S
#Raregivers #RareDisease #EmotionalHealth #Caregivers #MentalHealthAwarenessMonth
@raregivers

[RARE Revolution Magazine® @RareRevolutionM]

Call for Sponsors! Raregivers has grown from 7 women in a California living room to over 565,500+ families across 38 countries. Join the Raregivers Coalition and help deliver emotional relief to 3.5 million caregivers by the end of 2026! Visit the @Raregivers Page on Linkedin to see the latest updates. "When life gets medical, people get emotional." Help Raregivers deliver emotional relief today.

[RARE Revolution Magazine® @RareRevolutionM]

3 Rare Truths from the Raregiver's Leadership Training:

Caregivers need space to be themselves
Caregivers need community
Self-care isn't selfish

When life gets medical, people get emotional. It's time we act like it. 💙
Learn #TheRareTruth → https://t.co/GuDGLIQa9S | @raregivers
#Raregivers #RareDisease #MentalHealthAwarenessMonth #Caregiving

[RARE Revolution Magazine® @RareRevolutionM]

A rare disease diagnosis is traumatic. But it doesn't have to be the whole story.
Real caregiver Melinda Atnip reminds us — on the other side of the hard stages, there is purpose.
In partnership with @havas @havaslynxny @havashealthnetwork
Find your community → https://t.co/GuDGLIQa9S
#Raregivers #TheRareTruth #RareDisease #MentalHealthAwarenessMonth
@raregivers

[RARE Revolution Magazine® @RareRevolutionM]

When life gets medical, it gets emotional.
We've partnered with @CrisisTextLine so our community always has somewhere to turn. 💙
Text RARE to 741741 (EN) | Text RARAS to 741741 (ES)
Free. Confidential. 24/7.
#MentalHealthAwarenessMonth #TheRareTruth #Raregivers
@raregivers

[@raregivers @raregivers]

Caregiving isn’t just stressful — it’s isolating.

This is the Rare Truth. If this is you, find your community at Raregivers. See the Rare Truth at https://t.co/5b8SSgdtdP

#TheRareTruth #Raregivers

[@raregivers @raregivers]

☀️ Who are we? We’re Raregivers—a nonprofit dedicated to uplifting patients, caregivers, and professionals impacted by rare, chronic, and complex conditions.

Learn more about how to get involved on our website: https://t.co/YZgn0NB19e

[@raregivers @raregivers]

At Journeys of the Heart, our 25th Anniversary celebration and Raregivers Global Impact Awards, you’ll hear from voices at the forefront of caregiving, advocacy, and rare disease innovation.

Register now: https://t.co/szg2X77CrA

[@raregivers @raregivers]

The Raregivers Coalition is a growing network of organizations and individuals committed to supporting families facing rare, chronic, and complex conditions.

You can learn more and access our communications toolkit on our website: https://t.co/hF7PoHHq1O

[@raregivers @raregivers]

Autoinflammatory Disease Awareness Month is here — a time to spotlight rare conditions that cause repeated flare‑ups of inflammation.

We stand with every caregiver and family navigating these challenges.

💙 Join us at https://t.co/zE04Eaw0u8

[@raregivers @raregivers]

Behind every hour of support, every breakthrough, and every caregiver uplifted—there are donors, sponsors, and changemakers making it possible.

Your support doesn’t just sustain this work—it expands it. 

Join us: https://t.co/szg2X77CrA

[@raregivers @raregivers]

We’re proud to partner with Remember the Girls. Together, we’re amplifying the voices of women and families impacted by these rare conditions.

Join us in strengthening this network of empowered women at https://t.co/jeDwiHGUOW and https://t.co/wrYykOSF0y.

[@raregivers @raregivers]

☀️ Today on #NationalNonprofitDay, we’re celebrating the power of mission‑driven work and the incredible Raregivers community. For 25 years, we’ve stood beside families facing rare, chronic, and complex conditions.

Learn more: https://t.co/jeDwiHGUOW.

[@raregivers @raregivers]

In our latest blog, we’re sharing powerful insights every raregiver should hear — from setting limits with anxious thoughts to trusting your gut when navigating schools and systems.

Read the full blog: https://t.co/modsGnJxxc

[@raregivers @raregivers]

In one month, we’re bringing this conversation to our biggest stage yet. Join us Friday, September 12th for the Raregivers Global Impact Awards & 25th Anniversary Celebration at Salesforce Tower and the UCSF Sustainable Caregivers Summit.

Learn more: https://t.co/txSL7GezGb

[@raregivers @raregivers]

🌟 Spotlight: Rachel Halsall, ACC. Rachel is an Executive Systemic Coach, Facilitator, and Public Speaker who excels at guiding leaders through career transitions and into new levels of leadership. Learn more about our incredible team: https://t.co/kC2cn0uJqJ

[@raregivers @raregivers]

August is Spinal Muscular Atrophy (SMA) Awareness Month — a time to honor the individuals living with SMA and the caregivers who stand with them.

we created the Raregivers Journey Map to help caregivers: https://t.co/xUhUlpFeO3