The more knowledgeable and connected patients can be, the more empowered they become about their health care.
Talking with and learning from others who have had similar experiences can help patients face the challenges of coping with sarcoidosis. FSR has several programs to provide people affected by sarcoidosis with the support they need to successfully cope with this disease.
Connect with Inspire, the Online Support Group
Since its launch in November 2006, the FSR Sarcoidosis Community on INSPIRE has offered more than 23,000 patients, their families and caregivers a safe, trusted online environment to share stories, conversations and as much or as little personal information as desired. Members from all 50 states and more than 60 countries are actively participating in discussion groups and building a network of online friends. They can also create personal blogs (online diaries) to tell their stories on a daily basis. Learn More!
In-person support groups can provide a great way for patients and their family members to share experiences, emotions and knowledge. Connecting patients also advances the research mission as shared knowledge empowers others to learn and to get involved in ways to help. The groups are also powerful allies in raising funds for the mission. Combining the members’ drive and tenacity to fight this disease become an unstoppable force when the support groups work to raise funding for our initiatives. FSR offers the only updated list of local groups in the United States available on-line.
Start a Local Support Group
The Foundation recognizes the value of support groups both for connecting with other patients and for raising awareness and funds for research. If you are interested in looking for guidance with starting a group, we can put you in contact with a knowledgeable leader. Download our support group manual and contact us at 312-341-0500 or info@stopsarcoidosis.org to connect with other support group leaders.
Connect with an FSR Patient Ambassador
FSR Patient Ambassadors work closely with FSR staff to support and empower other patients, having personal experiences with the disease and ongoing training from FSR. Find one in your state.
Raise Awareness and Fundraise for Research
Patient groups and collaborations are also powerful allies in raising funds for the mission. Combining the members’ drive and tenacity to fight this disease become an unstoppable force when the support groups work to raise funding for FSR initiatives. Through such projects as Sarcoidosis Awareness Month and year-round events, individual patients and support groups are invaluable in supporting the FSR mission and changing their own future. You can help FSR raise awareness of the disease and support research throughout the year by hosting a local event. Commemorate a special occasion such as a birthday or anniversary by asking your guests to make a charitable contribution to FSR. Or consider hosting a golf outing, a hike, a birthday or cocktail party, a car wash or another event to raise funds for FSR. First, see our Third Party Fundraising Guide & Application Form. Then, for creative ideas and helpful tips to get started, download our Third Party Event Handbook!
April is Sarcoidosis Awareness Month! Learn how you can raise awareness for sarcoidosis in your community.