The Foundation for Sarcoidosis Research recently launched a Patient Ambassador Program called “Ask the Ambassadors!” to help people with sarcoidosis clarify questions they may have about life with the condition, treatment options, and other topics.
The foundation believes that the causes of sarcoidosis, and ultimately a cure, will be revealed through rigorous and comprehensive scientific research, fueled partially by patient engagement.
The program puts that belief into action by selecting patient ambassadors nationwide to work closely with the foundation in empowering patients, as well as advocating on the local and national levels by supporting programs and fundraisers.
Patient ambassadors will also help gather and analyze feedback to make specific recommendations on how to strengthen the effectiveness of other programs sponsored by the foundation.
“Ask the Ambassadors!” is a virtual Q&A that allows everyone to submit questions online through the foundation’s website here, no matter if they’re a newly diagnosed patient or someone who’s had the disease for years. Caretakers can also submit questions, as well as medical professionals.
The program aims to answer specific questions that only people who have lived through the same experiences with the disease can relate to.
Some of the subjects patients have asked about include:
- How do I talk about sarcoidosis with my loved ones?
- How do I get my doctor to explore more treatment options than just steroids?
- What are some tips for getting through bad brain fog days?
Some questions will be selected and then answered per post, depending on the number of questions submitted. Be aware that your questions may not be answered right away; there may be an ambassador who is particularly knowledgeable about your subject, and that person may no be available right away.
One note: Ambassadors cannot answer any medical questions about sarcoidosis because they are not trained physicians.
The online form accepts only three questions, but if participants have more than three questions, these can be submitted a second form.
So far, the Patient Ambassador Program has 73 volunteers (all patients and loved ones), all of whom have been formally trained by the foundation about sarcoidosis, patient advocacy, research, and other issues related to the disease.
Ambassadors represent the foundation in 43 U.S. states, with their numbers growing every year.