As with many under-diagnosed diseases, getting the care and support you need can be challenging. In order to receive the best care possible, it’s vital that you become your own healthcare advocate. The objective of this section is to help you find the resources and information you will need to support your efforts.
FMD Awareness Products
(can ship internationally)
Help us to spread awareness about Fibromuscular Dysplasia!
FMDSA Awareness Tshirt
FMDSA Awareness Mug
FMDSA Awareness Tshirt
FMD Bracelet Program
A Letter from our Executive Director, Pam Mace
My name is Pam Mace, and like most of you, I have Fibromuscular Dysplasia (FMD). I was first diagnosed with a left vertebral and bilateral carotid artery dissections after experiencing a TIA (Transient Ischemic Attack or ministroke). I also formed carotid aneurysms that led to several procedures, and a further diagnosis of renal FMD.
With so little information and difficult experiences to deal with, those of us with FMD have evolved into our own little family and depend on each other for support and an understanding of the disease.
In honor of our FMD family, I wanted to create a bracelet that would symbolize the unity among us and raise awareness about FMD. Together with Katie Janoch, jewelry designer, FMDSA has created a bracelet that we feel reflects the diverse challenges we face with FMD and the brilliant glimmer of hope for all of us with this disease.
Beads were chosen in the design of this bracelet to represent the “string of bead” appearance of affected arteries that is classic for the most common form of FMD. Brilliant blue to signify the vascular system and a tree charm to represent both the branches of your arteries affected and life itself. The bracelet is exclusive to FMDSA and will serve to raise awareness about this disease. We proudly offer this item as a symbol of FMD awareness. I hope you join me in purchasing and wearing this very special “string of beads” to unite all of us who support FMD awareness.
Order of The Red Boa
As you can see in the photo above many of our members are wearing their red boas while at the same time supporting Rare Disease day. The Order of The Red Boa was created by member Susan Bell for women diagnosed with FMD. To learn more about the Order of The Red Boa.
Click here and you can print a certificate to remind you that you are not alone. After that, all you need to do is purchase your boa.
FMDSA Draw My Life.
Just for fun!
Play our word search puzzle
Beadie Fun Fact
Regardless of initial site(s) of vascular bed involvement, patients with FMD should undergo at least one assessment for intracranial aneurysm with brain CTA or MRA
"Faces of FMD" Patient Stories
PLEASE NOTE: FMDSA is not responsible for the accuracy of our patient stories, nor any medical conclusions contained therein. The purpose of this section is simply to provide a forum for our members to tell their stories in their own words.
If you would like to be evaluated at one of the FMD clinics below, please contact them directly. Please note that not all **clinics participate in the US Registry for FMD, for a list of registry centers currently participating
visit the US Registry Page on our website.
Baptist Cardiac and Vascular Institute
The FMD program at the Baptist Cardiac and Vascular Institute in Miami provides patients with FMD specialized care by a multidisciplinary team of clinicians’ experts in the evaluation and management of patients with FMD. For more information, visit www.miamivascular.com.
Emory Healthcare - Fibromuscular Dysplasia Program
We are excited to share that Dr. Bryan Wells of Emory Hospital in Atlanta has announced their new Fibromuscular Dysplasia Program. The Emory FMD Program has a multispecialty team that provides comprehensive, coordinated care in all aspects, including evaluation, diagnosis, genetics, medical treatment, invasive procedures (when needed), and disease surveillance.
Johns Hopkins Hospital
The Johns Hopkins Fibromuscular Dysplasia Clinic is a multidisciplinary clinic dedicated to the diagnosis and treatment of FMD. Overseen by Vascular Medicine and Nephrology, the clinic offers expert management from Vascular Medicine, Nephrology, Neurology, Cardiology, Vascular Surgery, and Interventional Radiology. For an appointment, please contact Dr. Elizabeth Ratchford, MD (firstname.lastname@example.org; 443-997-0270) and or Dr. C. John Sperati, MD, MHS (email@example.com; 410-955-5268) for more information, please visit their website.
Massachusetts General Hospital Vascular Center
The Fibromuscular Dysplasia Program at the Massachusetts General Hospital Vascular Center provides patients with specialized care for Fibromuscular Dysplasia (FMD). Massachusetts General Hospital is one of the only hospitals in the United States to bring together a multidisciplinary team of clinicians dedicated to diagnosing, treating and helping patients manage FMD. For more information, visit www.massgeneral.org/FMD or call 877-644-8346.
Mount Sinai Heart Center for Fibromuscular Dysplasia Care and Research
The prevalence, cause, prognosis and optimal treatment of fibromuscular dysplasia (FMD) is not known. Despite an improved clinical understanding of the disease, through initiatives such as the United States Registry for FMD, there has been little progress in understanding the biologic cause of FMD since its first description in 1938. Data from the registry suggests that many patients had subtle manifestations of FMD for years before diagnosis and treatment.
There are a number of similar features that occur in family members of patients with FMD. This suggests that genetics play a significant role in the cause and/or predisposition for developing FMD.
To begin to identify the cause and eventual treatment of FMD, we have formed “The Mount Sinai Heart Center for Fibromuscular Disease Care and Research” with the goal of sorting out the cause and full clinical spectrum of FMD. We have a multidisciplinary team of experienced clinicians dedicated to treating patients with fibromuscular dysplasia. For an appointment email firstname.lastname@example.org or email@example.com or call 212-241-9454 for an appointment with Dr. Jeffrey Olin or Dr. Daniella Kadian-Dodov.
University Hospital, Cleveland Ohio
The FMD Program at University Hospitals provides multispecialty care for patients with FMD and dissection as is run within the Vascular Center of the Harrington Heart and Vascular Institute. Dr. Heather Gornik directs the program, which is also a site for the US Registry for FMD. Patients are seen at multiple locations in the Cleveland area. A quarterly information and support group is offered as well.
For more information, visit:
To schedule an appointment, call: 216-250-9806
The University of Kansas
The hospital’s Fibromuscular Dysplasia program provides patients with specialized care for FMD. Our multidisciplinary team of specialists, led by Kamal Gupta, MD, offers advanced diagnosis, treatment and long-term management of FMD.
University of Michigan
The University of Michigan Health System faculty and staff have had a longstanding interest in the management of fibromuscular dysplasia (FMD) and now offer a combined, multidisciplinary clinic for patients diagnosed or suspected of having fibromuscular dysplasia (FMD). If you would like to be seen at the University of Michigan, call the Cardiovascular Call Center at 1-888-287-1082 and ask to be seen by one of the physicians who specialize in managing patients with FMD.
University of Virginia
The University of Virginia Fibromuscular Dysplasia program is a multi-disciplinary clinic coordinated by Vascular Medicine physician Aditya Sharma who in conjunction with vascular interventional radiologists, vascular neurologists, vascular surgeons and other specialties provide state of the art diagnostic and therapeutic options to treat people with FMD. The program is very active with the registry and other research related to FMD.
Please call 434-243-1000 to schedule an appointment.
Prisma Health Upstate
Dr. Bruce Gray has special interests include peripheral intervention for aortic aneurysm, carotid, renal, and lower extremity disease. Special expertise in fibromuscular dysplasia and congenital vascular diseases are unique to the region. Greenville, SC 864-454-8272
Dr. Kambiz Zorriasateyn, MS FACP RPVI
Dr. Kambiz Zorriasateyn of NorthShore University Health System is a specialist in the areas of FMD and SCAD and would love to see you! (Not yet part of the USFMD Registry)
FMDSA Online FMD/SCAD Inspire Support Group
Please join us on our FMD Inspire support group. To be taken to our group, click here. Post your own questions or just read those from others on a range of FMD topics.
Regional FMDSA Networks
FMDSA is in the process of organizing Regional Network Volunteers/ Groups across the country. If you do not see your City or State listed, please check back soon as we are in the process of adding more groups. Please note these groups are informal and run by volunteers, many who also have FMD.
The volunteers/groups have been formed to offer support for affected persons and their families and to foster local efforts to further the FMDSA mission. It gives you the opportunity to meet others who have also been diagnosed with fibromuscular dysplasia and or spontaneuous coronary artery dissection (SCAD) the opportunity to promote public and professional awareness of the disease in your community. For questions about the groups please contact Carol Rogers at firstname.lastname@example.org
The Tree as Our Symbol
The tree has always been a universal symbol of many things, including wisdom, protection, and strength. Specifically, in terms of Fibromuscular Dysplasia, the tree’s branches signify the arteries affected by this disease, and life itself.
Follow our Facebook
For latest updates and news follow our facebook page. We post daily and it’s a great way to stay connected.
Regional Network Volunteers/ Groups
Mary Jo Hicks at email@example.com
Cami Bremer at firstname.lastname@example.org
International Volunteer Network and Groups
Robsom Alvarenga at email@example.com
Rochelle DesRochers at firstname.lastname@example.org
Eszter Pechy Alvarenga email@example.com
You can find the UK and Ireland group on Facebook.
Lena Reznik @ firstname.lastname@example.org
Madelon Bouwmeester, website click here
Cherrill Bell at email@example.com
Kuksa Duksa at firstname.lastname@example.org
Ashleigh Botha at email@example.com
Nina Verstraete firstname.lastname@example.org