To fulfill our mission, our staff and dedicated volunteers are working tirelessly to support three major program areas:
Patient Outreach and Education Programs (PREP)
Patients are not only the reason for our mission, but are absolutely the key to achieving it. Informed, engaged patients are critical to breakthroughs in disease research. We focus our efforts on educating patients about their disease, as well as helping them understand the value they bring to clinical research. Initiatives include:
- Patient Advocacy and Education Materials – at the core of the PREP program, these materials provide information about sarcoidosis for the purpose of empowering patients and helping them to increase awareness for this disease in their own communities.
- Physicians Directory – as sufferers of a rare disease, many patients struggle to find knowledgable and experienced providers to treat their sarcoidosis. This invaluable tool is the result of years of work with patients, physicians, and hospitals throughout the world, collaborating identify physicians with the interest and expertise to be included in our directory.
- Clinical Trial Outreach – our team works closely with investigators around the world to stay informed about research trials in need of patient engagement. Patients can stay informed about trials that are currently recruiting through our blog, as well as by signing up for regular updates through our Clinical Trial Interest Indicator. Through direct outreach, we are ensuring that clinical trials aimed at better understanding and improving treatment options for sarcoidosis are successful patients recruitment efforts. This advances the entire research space, as well as putting opportunities to accelerate research into the hands of patients.
- FSR Patient Ambassadors – one of the primary goals of our Patient Ambassadors is to to empower patients and facilitate grassroots outreach, helping us to reach especially those patients from rural and under resourced areas. There is no one better equipped to help support and inform other patients than those who understand sarcoidosis on a personal level. Empowered with ongoing training and support from FSR staff, more patients are able to connect with resources to find knowledgable providers, take control of their treatment plan, and get involved to advance research. Meet our team.
- Support Group Directory – “You don’t look sick” – a common phrase uttered to patients by well-meaning family members and friends who are unable to understand what their loved one is going through. Meeting another patient who understands their journey has been an invaluable experience for many sufferers. This tool helps patients find in-person support groups around the world. Through Inspire, we are also able to connect individual patients to an online community of over 30,000 members offering their support and experiences with this disease.
- Patient Conferences – provide patients and loved ones the opportunity to learn about sarcoidosis and their treatment options with experts in the field. Conferences also allow attendees to learn about FSR’s research initiatives and to network with other patients in their region.
Physician Outreach Programs (POP)
The FSR Physicians Outreach Program (POP) provides targeted resources to physicians nationwide and even worldwide who treat or are seeking to treat patients with sarcoidosis. FSR provides multiple online, print, conferences, and networking resources to physicians including information on epidemiology, demographics, treatment protocols, research updates, and therapy options. In addition, FSR provides doctors with opportunities to connect with patients via surveys, a physician’s directory, mapping of sarcoidosis clinic sites and centers of excellence, mappings of locations of high patient populations, and conferences and events.
FSR hosts an ever-growing database of over 400 physicians who have connected with FSR for information and/or directory listings; we conduct targeted outreach to these and other physicians, medical care providers, and health care institutes to ensure updated education and resources are available to advance the best possible care for patients.
FSR collaborates with the World Association of Sarcoid and other Granulomas Diseases (WASOG), the American Association of Sarcoidosis and other Granulomas Diseases (AASOG), American Thoracic Society (ATS) and American College of Chest Physicians (ACCP), NORDS, NIH, and others allowing widespread outreach to thousands of doctors beyond the FSR database. The Foundation’s POP initiative includes the following:
- Communications – Monthly Email Blasts on research, treatment, and resource updates to physicians and health centers
- Directories – Physicians Directory, a searchable online directory allowing patients seeking sarcoidosis treatment to connect with physicians with substantial experience in sarcoidosis.
- Treatment Protocol – Sarcoidosis Treatment Protocol, a mobile app with options for print and web access, guides physicians in treating sarcoidosis. FSR’s Scientific Advisory Board developed a Physicians’ Treatment Protocol that can offer expert information to physicians to help guide their diagnosis and treatment decisions.
- Locators – Online maps and directories identifying sarcoidosis clinics and centers of excellence throughout the nation and online mapping identifying the regional, state, and city locations of patient populations
- Education Material Sarcoidosis Brochures and materials in printed form, including the printing and shipping; on-line research updates and resources
- Peer-to-Peer and Patient Connections – Conferences and Meet the Expert Sessions connecting patients to doctors and offering physicians peer-to-peer research and treatment sharing
- Advisory Board – The FSR Scientific Advisory Board (SAB) made up of 13 of the nation’s top experts in the field of sarcoidosis. The SAB is also expanding in 2014 to include worldwide membership. These researchers and physicians meet quarterly to provide leadership to the FSR scientific research agenda and for peer-to-peer research and treatment sharing.
- Continuing Education Notices – Accredited Continuing Education and Non-accredited Professional Educational Activities are promoted and featured on FSR multiple social media sites and website. These opportunities are often hosted by world-leading health organizations including Johns Hopkins, Mt. Sinai School of Medicine, National Jewish Health, Cleveland Clinic, Vanderbilt University, Mayo Clinic, etc.
- Physician and Investigator Cohort – this network represents providers and researchers worldwide who have joined us in the fight against sarcoidosis. Whether they joined to stay informed of the research, to build their career with a keen interest in sarcoidosis, or because they’re leading worldwide research efforts, the collaborative efforts of this network continues to improve care for patients and advance research.
- FSR Grants – have provided new and emerging researchers in the sarcoidosis space the opportunity to attend continued education opportunities, present their research at major conferences, and gain fund for promising research efforts.
- Patient Recruitment for Clinical Trials – ensuring adequate recruitment for trials in academia can be especially difficult. By informing patients of these opportunities and bridging the gap between these investigators and patients, we are ensuring that researchers are successful in seeing the trials to completion and advancing the entire research space.
FSR Scientific Research Agenda
The FSR Scientific Advisory Board developed an ambitious Scientific Research Agenda that identified five specific areas of focus to help fill the gaps that exist in the sarcoidosis field. We have consciously limited our resource spending on these areas, knowing that once these initiatives were created, we would inspire, both on market level and a philanthropic level, others to bring their own resources into the fight for treatments and answers. Here are those areas and the upcoming goals:
- Animal Model – Major outreach has been put into place to secure funding for this critical discovery, both with individual giving prospects, pharma and government partnerships, and venture philanthropy. FSR is included in NIH discussions on the priority level of an animal model and a potential large-scale partnership. In addition, FSR is exploring alternative models to support, including human tissue models.
- Patient Registry – Currently over 2,000 patients are registered and in 2016, we are launching an engagement plan that will hopefully lead to thousands more joining. We will continue the major cleanup and validation tasks, as led by our new Patient Registry Committee, as well as build a process manual defining the recruitment, validation, and data sharing processes. Further, we expect to publish several academic articles overviewing the registry and the data collected to date, and FSR has been accepted to present a poster on the registry during the May 2016 ATS conference.
- End Point Development – In helping dire determination and consensus around what is the ideal measurements for assessing outcomes in trails and other treatments, FSR has been involved in discussions with NIH, FDA, WASOG, and AASOG members and key players underway; it may likely turn out that other projects and partnerships will result in endpoint development rather than this being a project on its own. The Scientific Advisory Board will determine the best pathway for this agenda item’s progress.
- Clinical Studies Network – Launched in 2015, this 8-member consortium brings together an international partnership of world-renowned medical institutes and researchers for unprecedented collaboration in studies and drug trials toward the treatment of sarcoidosis. 2016 will focus on the first study, already under IRB approval, and will culminate with a published report which will help move the needle forward. In addition, FSR will continue to explore and potentially partner with pharma industry and others to utilize the CSN for additional, concurrent studies that can deliver valuable information.
- Patient Resource & Education Program – 2016 programming will include maximizing and building the current expanded resources and tools including: facilitating our new suite of patient conferences, full rebuilding of the physicians outreach program and physicians directory, a new first-of-its-kind Sarcoidosis Patient Ambassador Program, increased engagement in the sarcoidosis online community, and continued expansion of the website and social media initiatives.