Patient Support

Patient
Resources

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

$20.00

FMDSA Awareness Mug

$20.00

FMDSA Awareness Tshirt

$20.00

FMD Bracelet Program

A very special “string of beads” for FMD awareness.

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.

To order your bracelet, please contact FMDSA at admin@fmdsa.org
Click here to print your FMD Bracelet Card to go with your FMD Bracelet now!

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.

General Resources

FMD Dictionary

This dictionary includes a lot of terms you will hear related to FMD. It was written specifically with patients in mind.

Patient Toolbox

Play Video

FMDSA Draw My Life.
(FMD Explained)

Just for fun!
Play our word search puzzle

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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

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"Faces of FMD" Patient Stories

We’ve started to collect stories from around the world and wanted to provide an outlet for the sharing of these personal experiences. If you are interested in including your story, please Contact Us.

Adult FMD

Adolescent FMD

Pediatric FMD

SCAD FMD

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.

FMD Clinics

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.

To schedule an appointment with Dr. Barry Katzen or Dr. Ian del Conde, please email hughg@baptisthealth.net or iand@baptisthealth.net, or call 786-596-5990.

Cleveland Clinic

The Cleveland Clinic FDM Clinic is a multi-disciplinary clinic based out of their Vascular Center.
Please call 216-445-3689 or 800-223-2273 to schedule an appointment.

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.

To schedule an appointment please call 404-686-8203. For more information on the FMD Program at
Emory please visit their website

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 (evr@jhmi.edu; 443-997-0270) and or Dr. C. John Sperati, MD, MHS (jsperati@jhmi.edu; 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 annette.king@mountsinai.org or jeffrey.olin@mountsinai.org 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: 

https://www.uhhospitals.org/services/heart-and-vascular-services/conditions-and-treatments/vascular-disease/fibromuscular-dysplasia-program

To schedule an appointment, call: 216-250-9806

University of Illinois Medical Center

The University of Illinois FMD Clinic is a multi-disciplinary clinic based out of their Stroke Center.
For appointments, contact Maureen Hillmann at 312-355-3863.

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.

For more information, call 913-945-1227 or visit kumed.com/cardiology.

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.

Seattle Children’s Hospital

Seattle Children’s Hospital serves the largest region of any children’s hospital in the country.
Contact Dr. Susan Halbach, Pediatric Nephrologist, at 206-987-2542

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

North Central Heart

Sioux Falls, SD, Dr. J. Michael Bacharach is a cardiologist, vascular medicine and intervention specialist. 605-977-5000

University of Colorado

Dr. Kevin Rogers specializes in vascular disease, stroke, hypertension, and performs endovascular treatment. 720-848-5300

Stanford Vascular Clinics

Stanford, CA, Dr Eri Fukaya is a vascular medicine specialist and surgeon. 650-725-5227

Dr. Kambiz Zorriasateyn, MS FACP RPVI

Vascular Medicine

FMD/SCAD Clinic
Northshore Cardiovascular Institue

Location: 1000 Central Street Suit 730 Evanston, IL 60201
Appointment: 847-663-8050 – Mrs. Tamar Sutherland
Fax: 224-251-4407

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)

Support Groups

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 carol.rogers@fmdsa.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

Alabama
Mary Jo Hicks at hicksjo@bellsouth.net

Arizona
Carol McGatha at cmcgatha@cox.net

Nina Verstraete at nina.verstraete.fmdsa@gmail.com

California- (Northern)
Mimi Petersen at calgal1212@gmail.com and Robin Berlin at rberlinrd@gmail.com

Colorado
Cami Bremer at cami.bremer@gmail.com

View more contacts →

International Volunteer Network and Groups

Belgium
Cathlin Jamison at cathlin.fmd@gmail.com.
FMD-Be website, click here

Brazil
Robsom Alvarenga at robsom@gmail.com

Canada
Rochelle DesRochers at rochelle.desrochers@fmdsa.org

Hungary
Eszter Pechy Alvarenga eszter.pechy@gmail.com

Ireland
Karen Rockwell
fmd.ukireland@gmail.com
You can find the UK and Ireland group on Facebook.

Israel
Lena Reznik @ lenar1982@gmail.com

Netherlands
Madelon Bouwmeester, website click here

New Zealand
Cherrill Bell at cherrypie@nowmail.co.nz

Poland
Kuksa Duksa at babikland@interia.pl

South Africa
Ashleigh Botha at ashy.botha@gmail.com

Switzerland
Nina Verstraete nina.verstraete.fmdsa@gmail.com

UK
Angeline Young at angeline@youngs-home.co.uk and Karen Rockwell fmd.ukireland@gmail.com