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In this episode, we are joined by Estela Mata, President and CEO of Looms for Lupus, a non-profit dedicated to raising awareness and providing support for those living with lupus, and other chronic conditions. Estela shares her personal and family journey with lupus and the profound impact of advocacy. She highlights the importance of community, the need for increased awareness, and the power of sharing personal stories, especially within the Hispanic community. Estela’s message of hope and resilience is a reminder of the strength found in community and the critical role of advocacy in chronic illness management.
Living Well With Lupus: A Toolkit for Women
The Toolkit, Living Well With Lupus: A Toolkit for Women was created to support women and their families in the lupus diagnosis and care journey.
Click on the link to access toolkit.
Building a Close-Knit Community: A Womans Journey with Lupus
The Society for Women’s Health Research spoke with Juana Mata, a patient advocate and co-founder of Looms for Lupus and Mata Advocacy and Support, about her journey with lupus. The following blog post captures takeaways from the conversation.
https://swhr.org/building-a-close-knit-community-one-womans-journey-with-lupus/
Building a Close-Knit Community: A Womans Journey with Lupus
The Society for Women’s Health Research spoke with Juana Mata, a patient advocate and co-founder of Looms for Lupus and Mata Advocacy and Support, about her journey with lupus. The following blog post captures takeaways from the conversation.
https://swhr.org/building-a-close-knit-community-one-womans-journey-with-lupus/
Juana's Story-Lupus and Clinical Trials- Let's Take Charge Campaign
The U.S. Department of Health and Human Services Office of Minority Health (HHS OMH) has joined forces with the U.S. Food and Drug Administration Office of Minority Health and Health Equity (FDA OMHHE) to launch the Let’s Take Charge! Campaign, an initiative to make lupus research more inclusive and diverse.
American College of Rheumatology Abstract by Juana Mata and Estela Mata
Meet Juana Mata and Estela Mata " The Mata Sisters, "Lupus Heroes"
Juana Mata and Estela Mata -
Support for Lupus Patients, their Families and Caregivers
http://www.thelupusproject.com/speakers/juana-and-estela-mata/
Rubio Announces AD 48 Woman of the Year Co-founder of Looms4Lupus
Sisters Share their Story of Living with Lupus, as a Patient and Caregiver
https://www.lupusresearch.org/sisters-share-story-living-lupus-patient-caretaker/
Hard Advocacy Work Pays Off for Lupus!
https://www.lupusresearch.org/hard-advocacy-work-pays-off-lupus/
2018 Los Angeles Walk with us to Cure Lupus Twilight Stroll-
Looms for Lupus was amongst the 52 organizations that joined the American College of Rheumatology for a joint letter to insurance to U.S. Governors.. urging to take action to ensure patient access to Hydroxychloroquine. https://www.rheumatology.org/Portals/0/Files/State-level-HCQ-sign-on.pdf
Looms for Lupus is one of the official supporters of the Covid-19 Global Rheumatology Alliance.
Covid-19 Global Rheumatology Alliance is a worldwide registry was created with a mission to create a secure de-identified , international case reporting registry and curate and disseminate the outputs from registry.
Looms for Lupus co-founders Juana & Estela joined Tiffany Westrick-Robertson from the International Foundation for Autoimmune & Autoinflammatory Athritis (AiArthritis) for a discussion on the need to increase ethnic participation in clinical research.
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