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.
Online Medical Information - Research
Launched in 1996, www.eMedicine.com comprises the largest and most current Clinical Knowledge Base available to physicians and other healthcare professionals.
Healthywomen.org is the one-stop shop for women's health information on the web. This site includes frequently asked questions and consumer tips on fitness, nutrition and disease prevention.
MedlinePlus has extensive information from the National Institutes of Health and other trusted sources on over 650 diseases and conditions. There are also lists of hospitals and physicians, a medical encyclopedia and a medical dictionary, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials.
Global Genes: Leading rare disease advocacy organization. Their mission is to eliminate the challenges of rare disease. They have developed RARE Toolkits, which we think you may find valuable. Some topics include:
Parenting a Child with a Life-Limiting Illness
Genetic Testing: Is This My Path to a Diagnosis?
Searching for Answers: Contacting Biopharmaceutical Companies Effectively
To view these and other toolkits, please visit their website.
Whooshers.com: Do you experience pulsatile tinnitus or the swooshing noise in your ear? Whooshers.com has a wealth of information and resources. Check out their really cool t-shirts as well.
A 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Provides education, services, and community-based activities in prevention, treatment, rehabilitation and recovery. Their site provides some very informative patient information on stroke.
A division of the American Heart Association and offers a wide array of programs, products and services, from patient education materials to scientific statements.
Major voluntary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation.
Exists to serve the needs, interests and welfare of all kidney patients and their families. Its mission is to improve the lives of fellow kidney patients and their families by helping them to deal with the physical, emotional and social impact of kidney disease.
Non-profit charitable organization created by a group of pilots to arrange free air transportation for any legitimate, charitable, medically related need. This service is available to individuals and health care organizations.
Not-for-profit organization that works with the public, government, health professionals, patients, careers and stroke survivors to reduce the impact of stroke on the Australian community.
Americans with Disabilities Act https://www.ada.gov/ada_intro.htm
The official US government site for people who have Medicare benefits.
The Office of Rare Diseases (ORD) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH). On November 6, 2002, the President established the Office in statute (Public Law 107-280, the Rare Diseases Act of 2002). A rare disease (also called an orphan disease) is a disease or condition affecting fewer than 200,000 persons in the United States. An estimated 25 million people in the United States have a rare disease.
Part of the National Institutes of Health. This is the Institute responsible for research of kidney disease.
The FDA is responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs, biological products, medical devices, our nation’s food supply, cosmetics, and products that emit radiation. The FDA is also responsible for advancing the public health by helping to speed innovations that make medicines and foods more effective, safer, and more affordable; and helping the public get the accurate, science-based information they need to use medicines and foods to improve their health.
The National Library of Medicine is a resource provided by the National Institutes of Health and is considered the most comprehensive library of medical information.
Official link to the Social Security Administration.
The official US government site for people who have Medicare benefits.
Official link to the Social Security Administration.
Source for affordable health insurance quotes from a variety of health insurance providers.
Help with the cost of medications. Also see RxAssist for information about individual US State Drug Assistance Programs.
Orphanet is led by a European consortium of around 40 countries, coordinated by the French team. National teams are responsible for the collection of information on specialized clinics, medical laboratories, ongoing research and patient organizations in their country. For information on research, clinical trials and resources in other countries, please click here.
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 (email@example.com; 443-997-0270) and or Dr. C. John Sperati, MD, MHS (firstname.lastname@example.org; 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 email@example.com or firstname.lastname@example.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:
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 email@example.com
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 firstname.lastname@example.org
Mimi Petersen at email@example.com
Cami Bremer at firstname.lastname@example.org
International Volunteer Network and Groups
Cathlin Jamison at email@example.com.
FMD-Be website, click here
Robsom Alvarenga at firstname.lastname@example.org
Rochelle DesRochers at email@example.com
Eszter Pechy Alvarenga firstname.lastname@example.org
You can find the UK and Ireland group on Facebook.
Lena Reznik @ email@example.com
Madelon Bouwmeester, website click here
Cherrill Bell at firstname.lastname@example.org
Ashleigh Botha at email@example.com
Nina Verstraete firstname.lastname@example.org