Sarcoidosis ❄ Advocacy ❄ Resource ❄ Connection
#SarcStrong
What is Sarcoidosis?
Advocacy
As sarcoidosis patients, we need to advocate for ourselves in a variety of situations: at home, at work, and even (especially) at our medical appointments.
(More info about advocating for ourselves coming soon)
As a community, we can make a bigger impact when we join together and make our voices louder. For sarcoidosis warriors like us, that often means working together with the rare disease community.
NORD’s Rare Action Network™ mobilizes grassroots supporters across the country to advocate for policies that benefit patients with rare diseases. The network operates primarily at the state level to complement NORD’s already robust Federal policy work.
Resources
Sarcoidosis News is the web's leading resource for news, information, and daily updates for Sarcoidosis patients and caregivers.
The Foundation for Sarcoidosis Research is the nation’s leading nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients.
Within Cleveland Clinic's Respiratory Institute, the Sarcoidosis Center serves as a single point of access for patients to receive the best care for their condition.
The Once Upon a Time: Sarcoidosis for Beginners page on Facebook offers introductory information for those who are newly diagnosed with sarcoidosis.
The World Association for Sarcoidosis and Other Granulomatous Diseases (WASOG) brings together clinicians and scientists dedicated to ILD [Interstitial Lung Disease] from all over the globe.
Connection
The Sarcoidosis for Beginners group on Facebook aims to remove some of the fear for those who are newly diagnosed by offering information and support. It is a place where we can share words of encouragement to the newbies, provide information on how to advocate for their own health, and how to build a supportive network for themselves.
AnCan was the first to innovate virtual, real-time, video chat support groups in multiple conditions moderated by patients for patients. With its Sarcoidosis Virtual Chat Support Group, you will be able to do a video chat with others who are affected by sarcoidosis and their caregivers.
The Stop Sarcoidosis Support Community Inspire connects patients, families, friends, and caregivers for support and inspiration.
The Foundation for Sarcoidosis Research has launched an online peer-led support group for people living with sarcoidosis FSR's Sarcoidosis Support Group continues to address the emotional needs of sarcoidosis patients everywhere through these virtual groups. Each month, FSR will host two groups, and participants can choose to participate in one of the two sessions offered.
Mark Your Calendars:
- Rare Disease Week (February 22 - March 2)
- Rare Disease Day (February 28)
- Sarcoidosis Awareness Month (April)
- Sarcoidosis Awareness Day (April 13)
- Dazzle4Rare (2nd week of August)