Providing increased awareness about Fabry disease is very important!
The NFDF has awareness materials as described below. Please read all the way to the bottom to get whole picture.
As a rare disease, most people have not heard of Fabry disease, one of about 7,000 known rare disorders. Most physicians do not know much about our disease.
We suspect that many people live their entire lives without knowing the underlying cause of their many Fabry disease symptoms. Many others are diagnosed very late after irreversible organ damage occurs. Increased awareness can change these tragic unnecessary circumstances to give people a chance at better and longer lives.
Everything we can do to increase awareness of our disease is helpful to find those who remain undiagnosed and to improve the recognition, diagnoses, understanding and management of Fabry disease. We wear wristbands, ribbons, pins, wear T-shirts, and display car magnets on our cars bearing our logo, symbols, and slogans to prompt conversations about our disease to improve awareness and understanding.
THE FABRY COMMUNITY'S OFFICIAL COLOR: In 2016, the Fabry community in the United States, Canada, and other participating countries adopted a dark blue as our official color in the spirit of a denim blue color used by other rare disease organizations. The color on the PMS color chart is PMS 541.
OUR OFFICIAL RIBBON: With an official color, we also adopted the official Fabry community ribbon design shown above. There are two versions of the ribbon. One version has gradient (fading) colors in the helix and one has solid colors in the helix. Producing some awareness materials with the gradient colors can be more expensive so we produced a second option. The art is available for anyone to use. The NFDF produces ribbons to send in our various mailings and can assist others in obtaining ribbons for special events.
The font and the colors in the helix may vary somewhat depending on the organization and specific uses but the basic identity should remain the same for participating countries and organizations. The font in the original ribbon is Maiandra GD.
The design for the Fabry ribbon is community property to be used by anyone who wants to produce Fabry awareness materials. The art vector files used to produce awareness materials are provided in the two Ribbon links below. They are Abobe Illustrator files so everyone may not be able to open them but you can save them to your desktop and share them with whoever is producing awareness materials for you. Please select the following link to read about how the official Fabry Disease Awareness Ribbon was developed.
The official Fabry awareness ribbon is a community ribbon. Anyone make produce the ribbons using the vector files in the links below.
Other countries that adopt the ribbon may use it as it is or change the colors to better match their Fabry disease support group colors.
LINKS TO THE COMMUNITY RIBBON ART FILES BELOW
Fabry Ribbon Gradient Colors (Vector files to produce ribbons with gradient colors)
Fabry Ribbon Solid Colors (Vector files to produce ribbons with solid colors)
Other awareness materials
Our awareness wristbands bear the slogan "Fighting Fabry Disease ... Living Better Longer" on the outside of the wristband and National Fabry Disease Foundation contact information on the inside.
We provide 8GB credit card style USB drive alert cards (shown to the left) as a dual purpose awareness product and USB storage drive to store information related to Fabry disease and medical information in a easily recognized convenient place.
Keep this card in your wallet or purse along with your My Health Handbook and Emergency Information booklet that we provide to be prepared in case of an emergency.
OBTAIN AWARENESS MATERIALS: When individuals with Fabry disease register on the NFDF website, we send our "My Health Handbook" kit which contains the items below. We send them internationally. We track kit distribution through our registration database. To register, select the register/login link at the top of our website homepage (www.fabrydisease.org), select the 4th option "Don't have an account", and complete the form. It may take us a couple of days to validate your account before you can log-in. Once validated, we will contact you to find out how many kits and other awareness materials you need for your family.
- The "My Heath Handbook and Emergency Information" booklet
- A stylish, durable carrying case
- An 8GB credit card style USB drive
- Awareness ribbon car magnets
- Awareness wristbands for your family
- Awareness ribbon lapel pins (metal)
- Awareness ribbon pins