"Sarcoid Networking Association"

"Sarcoid Networking Association" Sarcoid Networking Association
5302 South Sheridan Ave
Tacoma wa 98408 Sarcoid Networking Association - Newsletters, Articles and Books

01/06/2024

About 50% of those with sarcoidosis have ocular sarcoidosis. If left untreated, it can lead to permanent damage, including loss of vision, glaucoma, and cataracts. Many eye problems are treatable with various options; talk to your doctor if you suspect you may have ocular sarcoidosis.

01/05/2024

Take the next step in self-advocacy by learning more about the potential benefits and risks of sarcoidosis clinical trials, so that you can make an informed decision on what is right for you.

With sarcoidosis, everyone’s experience may be different. Connect directly with the RESOLVE-Lung team to discuss if this clinical trial may be right for you: https://loom.ly/NM7X0Rs to connect directly with the study team.

12/22/2023

Thank you to Marsha, sarcoidosis advocate and Community Group Leader with Medstar, an FSR Global Sarcoidosis Clinic Alliance Founding Member, for sharing her for Sarcoidosis and what the sarcoidosis community means to her!

When asked how would she invite others to help the sarcoidosis community, Marsha said:

1. Share information: Raise awareness about the condition by sharing educational resources and personal stories on social media or through word of mouth.

2. Organize events: Plan fundraising activities, walks, or community gatherings focused on promoting awareness and supporting sarcoidosis research.

3. Connect with organizations: Direct individuals to a reliable organization (FSR) that offer support services and opportunities for volunteering or donations.

4. Engage online: Participate in online forums, groups, or social media communities dedicated to sarcoidosis advocacy and encourage others to join discussions or contribute their experiences.

5. Use your voice: Write letters to policymakers, healthcare providers, or local media outlets to emphasize the importance of access to quality care and increased funding for research.

6. Lead by example: Show empathy, understanding, and compassion towards those living with sarcoidosis, inspiring others to follow suit and offer their support in any way they can.

Join Marsha in sharing your sarc on social, and visit our webpage to learn how you can get involved with Enriching Your Community: Nurturing Growth and Progress for Sarcoidosis: https://loom.ly/xhTOpK0

12/15/2023

Be a part of the largest and only Phase 3 study currently enrolling that may lead to approval of a new treatment in Pulmonary Sarcoidosis. Learn more at https://bit.ly/3P4LTcy

12/15/2023

Join FSR on Dec. 26th for a free, virtual event - Resolving to Thrive: Navigating Sarcoidosis in the New Year!

As we step into a brand-new year filled with hope and possibilities, it's the perfect time to reflect on our health and well-being as we navigate the sarcoidosis journey. Join us for a free, insightful webinar as we explore the intersection of New Year's resolutions and living with sarcoidosis.

Don’t miss out on the opportunity to listen to our expert Dr. Jinny Tavee of National Jewish Health, an FSR-Global Sarcoidosis Clinic Alliance Founding Member, who will be providing seven key resolution focus areas to take with you into 2024.

End the year on a positive note and roll that into the New Year! Learn more and register: https://loom.ly/GvBt3rM

12/03/2023

Uveitis is common complication of sarcoidosis and can cause glaucoma and cataracts. Therefore, sarcoidosis patients should have regular appointments with an ophthalmologist, twice annually. Learn more at www.stopsarcoidosis.org.

11/24/2023

As part of FSR's Enriching Your Community: Nurturing Growth and Progress Campaign, we invited community members to share their for Sarcoidosis! Katie is a Pulmonary Nurse, Neurosarcoidosis Patient, and Community Group Leader with Cleveland Clinic, an FSR Global Sarcoidosis Clinic Alliance Founding Member. Join Katie in sharing your sarc on social, and visit our webpage to learn how you can get involved with Enriching Your Community: Nurturing Growth and Progress for Sarcoidosis: https://loom.ly/xhTOpK0

11/22/2023

Cardiac Sarcoidosis (CS) is a rare form of sarcoidosis in which clusters of white blood cells, called granulomas, form in the tissue of the heart. Due to its high mortality rate, early detection and prompt initiation of treatment are critical. Note: Most patients respond to treatments favorably when treated appropriately and early.

Learn more: https://loom.ly/hpq0iQA

11/18/2023

The holiday season is a terrific chance to celebrate achievements made in the sarcoidosis community and recognize those who help shape this progress. As part of this movement, we invited community members to share their as part of our Enriching Your Community: Nurturing Growth and Progress Campaign.

Kapri is a Community Group Leader with Jane and Leonard Korman Respiratory Institute-Jefferson Health-National Jewish Health, an FSR Global Sarcoidosis Clinic Alliance Founding Member, where she helps inspire and educate other patients about sarcoidosis. Join Kapri in sharing your sarc on social, and visit our webpage to learn how you can get involved with Enriching Your Community: Nurturing Growth and Progress for Sarcoidosis: https://loom.ly/xhTOpK0

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Tacoma, WA
98408

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+12534710423

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