2017-08-16T08:56:15-04:00 2016-12-31 020644478 Wagner & Company CPA LLC 1655 W Market St Suite 525 Akron OH 44313 990 2016-01-01 010771966 Fibromuscular Dysplasia Society of America Inc FIBR 20325 Center Ridge Road Rocky River OH 44116 Bradley Daar President 2168342410 2017-08-14 true Steven Wagner P00027993 3308641550 208.40.100.85 2017-08-16 08:58:59 3460242017228yfweocn 2017-08-16 P D92180099A43175A2D43D354D88D701620882B13 D92180099A43175A2D43D354D88D701620882B13 2016 2021-01-29 14:40:06Z FMDSA 169636 false X www.fmdsa.org X 2003 DE FMDSA is a public health charity working towards better diagnosis and treatment of Fibromuscular Displasia (FMD). We do this by building awareness of FMD, funding research activities, providing patient support, and educating patients and the healthcare community. 6 6 2 0 0 150718 161377 18972 8207 53 52 0 169743 169636 40050 41666 0 54389 79554 0 22832 38881 40032 133320 161252 36423 8384 88469 103031 6178 88469 96853 FMDSA is a public health charity working towards better diagnosis and treatment of Fibromuscular Displasia (FMD). We do this by building awareness of FMD, funding research activities, providing patient support, and educating patients and the healthcare community. false false 49321 International Patient Registry: The patient registry has been developed in cooperation with the University of Michigan Health Systems Cardiovascular Outcomes Research and Reporting Program (M-CORRP). The purpose of the registry is to collect data on FMD patients seeking treatment at one of 13 FMD Regisry Centers in the United States. The database grew in 2016 to almost 1,607 patients being enrolled. Our FMD registry is the largest registry in the world collecting data on patients diagnosed with FMD. Our goal is to continue adding more centers within and outside the USA. The data base is helping us to learn more about the disease and will help us to one day set protocols for treating the disease and lead us to hopefully finding a cure. To date, over 30 medical articles and journals have been published with data from the patient registry, the data has been shared at medical conferences internationally. 22670 Annual Conference: FMDSA conferences are held in an effort to educate patients and medical professionals on the latest data being released.Every year attendance grows with more attendees being newly diagnosed patients. Caregivers and medical professionals interested in learning about FMD also make up a percentage of those in attendance. In addition to learning more about the disease the annual meeting provides an opportunity for patients to meet others also affected, this opportunity is actually one of the biggest draws to the meeting. We also host a separate meeting with all of the investigators that are participating in the patient registry to go over updates, current and future research projects. The meeting has provided a platform for different research projects including blood draws, saliva collection and quality of life studies. There is no other meeting in the World where so many FMD patients have had the opportunity to participate in research. 16162 Patient SupportAs we spread awareness and see a drastic increase in the number of patients being diagnosed, patient support has become a large part of our responsibility as an organization. A significant percentage of our paid employees time is spent assisting patients on calls, via email,social media, etc. 15591 Public Awareness Program:This program was initiated in July 2005 as a Grass Roots Awareness Program where we and patients educate their family, friends and healthcare providers about FMD with material provided by FMDSA. We have a number of valuable resources on our website to help communicate FMD in laymens terms, including a Public Service Announcement, as well as more in depth information for physicians that can help bridge the gap and build a better relationship between patient and physician. The PAP also includes educational work with media outlets, other organizations, journals speaking engagements and articles. We also offer live web chats and spree chats in conjunction with the Cleveland Clinic that are made public. 11398 Healthcare Professional Education Program:This program is a combination of attending medical conferences and presenting within hospital environments. The program is a major focus of FMDSA and has been an avenue to educate literally thousands of medical professionals. The result is a greater awareness of FMD within the medical community, improved medical expertise for patients, and development of key partnerships that are helping us spur more research activity. In addition to our Physician page, we have also created a research Network Page on the website that has all the information being published from the patient registry and other researchers studying FMD. There are also PowerPoint presentations and videos available for health care providers. We have seen a direct correlation between our awareness and educational programs to the increase in patients getting diagnosed. 7938 FMD Research: FMDSA did not directly fund any research grants in 2016. This category includes expenses related to the time we spend talking with candidate reserachers and follow up on medical data as well as time spent on the coordination of research projects. 1588 Website Education: One of our most important charters is to educate patients and family about FMD and we have become the recognized leader around the world for FMD support and resources. Our website continues to grow exponentially since inception with patients, family members and physicians from all over the world using our resources, especially our new Patient and Physician tool boxes. FMDSA is the premier resource of FMD information for the layperson and an excellent place for physicians to easliy find medical articles and abstracts. Our Honcode certification is a stamp of approval that verifies we are an up to date unbiased organization providing only medical certified information. The FMDSA website also offers patient resources and community events for those wanting to get more involved. 36515 124668 true true false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false true 0 0 true 2 true false false false false false false false false false false false false false false false X 6 6 false false false false false false false true true false false true true true true true true true true false X Pamela Mace 2168342410 20325 Center Ridge Road Rocky River OH 44116 X Bradley Daar President 3.00 0.00 X X 0 0 0 Sara Bailey Director-at-Large 2.00 0.00 X 0 0 0 Carol Rogers Director-at-Large 2.00 0.00 X 0 0 0 Jodi Roth Director-at-Large 1.00 0.00 X 0 0 0 Maureen Womack Secretary 5.00 0.00 X X 0 0 0 Pamela Mace Executive Director 60.00 0.00 X 62400 0 0 62400 0 0 0 false false false 161377 9917 161377 Annual MeetingConf 541900 8207 8207 8207 52 52 169636 8259 0 0 41666 41666 73736 60463 5899 7374 5818 4625 451 742 1250 1250 5655 866 486 4303 3955 3955 3403 2329 1074 12647 12647 1998 1998 Bank and merchant fees 2415 2415 State Registration fees 6234 6234 2475 2072 179 224 161252 124668 13752 22832 27935 42528 60534 50586 9917 88469 103031 6178 0 6178 X 88469 96853 88469 96853 88469 103031 8384 0 X true X false true false X 106541 115794 116349 150718 161377 650779 20033 6305 18972 8207 53517 126574 115794 122654 169690 169584 704296 51073 42554 93627 51073 42554 93627 610669 90 30 49 53 52 274 90 30 49 53 52 274 126664 115824 122703 169743 169636 704570 0.86670 0.84050 0.00000 0.00000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true MCORRP University of Michigan 24 Frank Lloyd Wright Drive Ann Arbor MI 48106 41666 Cash Patient registry Form 990 governing body review Part VI line 11 Form 990 is reviewed by the Chairperson and distributed electronically to each board member prior to signature and transmission to the IRS. Conflict of interest policy compliance Part VI line 12c Employees and directors of FMDSA are required to review and sign the FMDSA Code of Ethics and Professional Conduct which outlines the various policies of FMDSA including the conflict of interest and whistleblower policy. CEO executive director top management comp Part VI line 15a The pay of the executive director is determined by the board of directors. Other officer or key employee compensation Part VI line 15b The pay of the executive director is determined by the board of directors. Governing documents etc available to public Part VI line 19 The governing documents can be obtained through proper request to the organziation through contact information available on the website. General explanation attachment Other states registered:Alabama AL08-351AlaskaArizona 25431ArkansasCalifornia CT147629Colorado 20083005977Florida CH16556HawaiiIllinois 01-105,443Kansas 422-044-8Kentucky 6211Maryland 13970Massachusetts 48394Michigan MICS 28540MinnesotaMissouri CO-157-08New Hampshire 17337 Additional states registered:New Jersey CH-30785-00New MexicoNew York 20-47-45North Carolina SL004981North Dakota 9150Ohio 03-4369Oklahoma 4312203627Oregon 38826Pennsylvania 36253Rhode Island 97-3568South Carolina P15624Tennessee CO10684Utah 7096298-CHARVirginiaWashington 25347West VirginiaWisconsin 10631-800