Article
Jun 21, 2018
Rare disease patients find out soon after a diagnosis that they’ll have to learn advocate for themselves- in the doctors office, to insurance companies, and even to the government. Unfortunately,…
Topics: Community Partners/ Take Action
Jul 10, 2024
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Article
Feb 1, 2018
…matter to patients. If you are an individual who has been affected by sarcoidosis, complete the survey to ensure your voice is heard. All responses are anonymous and will feed…
Topics: Research
Feb 23, 2022
Ignore No More: In the News Articles and Publications Read FSR’s Ignore No More Campaign launch – official press release. BlackNews.com – Jeryl Prescott of AMC’s “The Walking…
Article
Feb 13, 2017
Health insurance can be complicated, especially if you have a rare or chronic disease. Figuring out if and how you can see a certain specialist or how to afford expensive…
Topics: Living with Sarcoidosis/ Online Educational Content
Article
Nov 6, 2018
…After discussing all of the options the CSN steering committee decided to take on a study focusing on cardiac sarcoidosis. CSN Steering Committee This new observational study, nicknamed the PapLand…
Topics: News/ Research
Jan 29, 2022
…African American women and providers to improve diagnosis, treatment, and outcomes for African American women. African American women bear the greatest burden when compared to all other groups impacted by…
Article
Sep 5, 2023
…many types of ILD and the damage caused by ILD can be irreversible and worsen over time. “Since the symptoms of ILD are similar to other more common illnesses, it…
Topics: Advocacy/ Awareness/ News/ Online Educational Content/ Research
Article
Sep 24, 2019
…and expensive, and there is a significant risk that they cause more harm than good. These are some of the “miracle cures” that have been discussed in the sarcoidosis community:…
Topics: Living with Sarcoidosis
Article
May 19, 2022
…machinery called mitochondria, that could be associated with multiorgan sarcoidosis. “I’m hopeful that this project and my future work will help people with sarcoidosis for years to come,” says Dr….
Topics: News/ Other/ Research