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 inititatives. FSR offers the only updated list of local groups in the United States available on-line. Find a local 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 email@example.com to connect with other support group leaders. Click here to add a support group.
FSR is in development of a service that will help connect patients looking to talk via phone with other patients. This service will be provided through volunteer sarcoidosis patients who welcome calls via appointment through a FSR sponsored service. Coming soon – please stay posted for more information!
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 inititatives. Through such projects as Sardcoidosis Awarensss 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! We encourage fundraising around April – Sarcoidosis Awareness Month! Use our specific guide developed by FSR Support Group Advisory Council! Click for toolkit on Awareness Month Fundraising.