FSR’s Patient Ambassadors are sarcoidosis advocates who have personally seen the consequences of this disease. We provide our ambassadors with training and tools so they can be better advocates in your community. Their training and efforts help spread knowledge about sarcoidosis, and provide newly diagnosed patients with a contact that understands what they are going through. The Patient Ambassador Program demonstrates FSR’s belief that advancements in sarcoidosis research are driven by patient outreach and engagement.
All of our patients ambassadors have a different experience and a different reason for becoming an ambassador. Find out in their own words what our patients ambassadors do and why they became involved with this program. Also be sure to see who your local ambassador is and reach out to them with any questions you may have!
What do you do as a patient ambassador?
“I’m a resource in real time, face to face, and electronically.”
“I try to spread/share info and support whenever possible. I do this through my blog, social media, advocacy, support groups, and anything else that comes up.”
“I reach out to former colleagues at the NYPD who are affected by 9/11 related illnesses. I’ve also tried to get a proclamation in Florida, but have not been successful as of yet.”
“I am more of mouthpiece if you will. Everyday I make it a point to engage with a stranger and introduce them to sarcoidosis/FSR. I’m in constant contact with a broad spectrum of people from all walks of life, so I just naturally begin a conversation.”
“I’m focused on fundraising and contributing to research endeavors. We need more treatment options. I feel like I’m on the front line of making a difference.”
Why did you become a patient ambassador?
“To help raise awareness and be a voice for those who are suffering in silence. No one is listens to those of us suffering from a disease that destroys us from the inside out.”
“I became a patient ambassador to learn more about my disease, particularly the research that is being conducted to help find a cure.”
“I wanted to learn more about sarcoidosis, to learn how to share more about sarcoidosis, and to actually share more about sarcoidosis to patients and non-patients.”
“I became a patient ambassador because I wanted to learn as much as I could to help others.”
“Because getting sick and getting diagnose is a lonely & depressing situation but finding community & becoming an advocate is empowering and comforting. I want to be a part of building that for other people who need it.”
“I became a patient ambassador to learn more about sarcoidosis. I also advocate by letting our political leaders know about sarcoidosis and what populations are affected.”
“I want to make a difference and help educate and fight through the many challenges of this disease.”
“To contribute. This disease is so complex and unpredictable. I want to make a difference by helping other patients and contribute to advancing research. Change starts with one person and together we can create positive change.”