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 you must 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.

FMDSA online FMD Inspire Support Group

Please join us on our FMD Inspire support group. To be taken to our group, please click here. Post your own questions or just read those from others, on a range of FMD topics.

FMDSA Facebook page.

Please click here to be directed to our page. We post daily and it's a great way to stay connected.

FMD Bracelet Program

A very special "string of beads" for FMD awareness. 

We proudly offer this bracelet as a symbol of 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. Click here, to print your FMD Bracelet Card to go with your FMD Bracelet. To order your bracelet, pleace contact Maureen Womack at maureen.womack@fmdsa.org

FMD Medical Alert Bracelet 

 

 

We are pleased to announce, that per membership request, we have in partnership with Lauren's Hope Medical ID Jewelry, taken our existing FMD awareness bracelet and evolved it into a medical alert bracelet. This one is finished off with a different charm — Lauren's Hope's signature "HOPE" charm, as we all hope for and work toward a cure for FMD. For information on ordering the medical alert bracelet and engraving, please visit the Lauren's Hope web site . FMDSA does not make any proceeds from the sale of this bracelet in order to keep the cost down for you. To print the card that goes with the medical alert bracelet, click here
 

General Resources

Medical Dictionaries
One of the primary tools you will require as you learn more about FMD is a health dictionary. You will run across many medical terms that will be new to you. This link has a number of dictionary resources to help.

US News - Best Hospitals
How does your hospital rank and where will you receive the best care?

Online Medical Information - Research

healthfinder
This site is operated by the US Dept. of Health and Human Services. This is one of the most comprehensive sites on the web for patient information.

eMedicine
Launched in 1996, www.eMedicine.com comprises the largest and most current Clinical Knowledge Base available to physicians and other healthcare professionals.

VascularWeb
This site is provided by the Society for Vascular Surgery. This link will lead you to some very helpful information of tests and treatments that are common to FMD patients. The information is presented in a very user friendly manner.

National Women's Health Resource Center, Inc.
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.

Medline Plus
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.

Disease Conditions
Medical Resource for all diseases and conditions information - cancer, neurological disorders, birth defects, AIDS, Alzheimer's, and many more.

Health Organizations

NORD - National Organization for Rare Disorders, Inc.
The National Organization for Rare Disorders (NORD), 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.

National Stroke Association
The National Stroke Association (NSA) provides education, services, and community based activities in prevention, treatment, rehabilitation and recovery. Their site provides some very informative patient information on stroke.

American Stroke Association
The American Stroke Association is a division of the American Heart Association and offers a wide array of programs, products and services, from patient education materials to scientific statements.

National Kidney Foundation
The National Kidney Foundation, Inc., a 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.

American Association of Kidney Patients
American Association of Kidney Patients (AAKP) 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.

Angel Flight
Angel Flight is a 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.

National Stroke Foundation (Australia)
The National Stroke Foundation is a not-for-profit organisation that works with the public, government, health professionals, patients, carers and stroke survivors to reduce the impact of stroke on the Australian community.

Government Resources

Medicare
The official US government site for people who have Medicare benefits.

NIH - Office of Rare Diseases
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.

National Institute of Diabetes and Digestive and Kidney Diseases
Part of the National Institutes of Health. This is the Institute responsible for research of kidney disease.

Food and Drug Administration
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.

National Library of Medicine
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.

Social Security Administration
Official link to the Social Security Administration.

Health Insurance

Health Insurance (healthfinder)
This site is operated by the US Dept. of Health and Human Services. You will find helpful links to Medicaid and Medicare information

Medicare
The official US government site for people who have Medicare benefits.

Social Security Administration
Official link to the Social Security Administration.

Online Health Insurance
Source for affordable health insurance quotes from a variety of health insurance providers.

Miscellaneous Links

Kinetic Muscles, Inc
KMI was incorporated in May 2001. Based in Tempe Arizona, KMI has developed the foundation for a line of products to assist physical therapists with repetitive practice therapy for stroke patients and other similar hemiplegic conditions.

Discover Mobility
Discover Mobility is a provider of products that help those with mobility problems regain their freedom. Their innovative products consist of Vans, Scooters, Electric Vehicles, Golf Carts, and Durable Medical Products.

Needy Meds
Help with the cost of medications. Also see RxAssist for information about individual US State Drug Assistance Programs.


Orphanet

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 specialised clinics, medical laboratories, ongoing research and patient organisations in their country. For information on research, clinical trials and resources in other countries, please click here