What’s your story? How and when does your heart break? How do you heal? Here’s a link to one of our stories. https://buff.ly/4hE1jk3
Eosinophilic & Rare Disease Cooperative
Non-profit Organizations
Tucson, AZ 141 followers
Together we wrap around the person with the disease as well as their loved ones as they navigate health and healthcare.
About us
Navigating chronic and rare diseases is difficult at best. Even individuals who are seasoned in the nuances of health care find roadblocks and challenges that at best are exhausting. At worst they create poor outcomes. It is a journey that requires extensive education from organizations like those you will find on our Resources page as well as a team, looking at the everyday. Together we wrap around the person with the disease as well as their loved ones as they navigate health and healthcare.
- Website
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www.eosinophilraredisease.org
External link for Eosinophilic & Rare Disease Cooperative
- Industry
- Non-profit Organizations
- Company size
- 2-10 employees
- Headquarters
- Tucson, AZ
- Type
- Nonprofit
- Founded
- 2021
- Specialties
- vasculitis, eosinophil, rare disease, rheumatology, asthma, education, resources, support, healthcare, medical, pulmonology, dermatology, advocacy, myasthenia gravis, gaucher, eosinophilic esophagitis, and hidradenitis suppurativa
Locations
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Primary
Get directions
Tucson, AZ 85757, US
Employees at Eosinophilic & Rare Disease Cooperative
Updates
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Whether your person has Myasthenia Gravis or not – please take 4 minutes to watch this video. Awesome insights here! “You’ll find that people want to help. Let them.” Mic drop. https://buff.ly/4fgstMx #carepartner #raredisease #myasatheniagravis #vasculitis #chronicillness
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Help others - learn from each other.... #carepartner #raredisease #vasculitis #myastheniagravis
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What book has brought inspiration, knowledge and/or support for you as a care partner? Please list in the comments. One of our favorites is “How to be Sick” by Toni Bernhard. #raredisease by prioxy! #vasculitis #myastheniagravis
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The impact of caring for someone with a vasculitis diagnosis is real. You’re not going crazy. Promise. Take a look at this article: https://lnkd.in/gKkqMhmN #raredisease by prioxy! #vasculitis #myastheniagravis
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It was wonderful to spend the morning with Alliance for Health Policy, the terrific #publicpolicy team from Amgen, staff from various #legislative offices, other nonprofits and #rarediseaseadvocates to collaboratively work on core aspects of curriculum to train new and existing staffers about #healthpolicy and #raredisease. #vasculitis #myastheniagravis #medicationaccess
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Not to freak you out or anything, but #caregivers vs. non-caregivers have a 63% increased mortality rate. https://buff.ly/3AIAZVn). Just sayin’. Self-care isn’t a nicety it’s a necessity. #raredisease #vasculitis #myastheniagravis
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What a busy day for Eosinophilic & Rare Disease Cooperative at the #ACRConvergence. We loved sharing our #heatkit poster with #rheumatologists from across the world, visited with our terrific partners Amgen and AstraZeneca and engaged in rich discussions about #treatments for #vasculitis (MPA/GPA, EGPA and GCA and Behcet's).
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