The Foundation of the NLA has established RADAR (the RAre Disease AwaReness campaign) as a national patient outreach program that will provide a plethora of resources and tools for both healthcare professionals and patients about several of the rare lipid disorders including (but not limited to):
The resources provided for this campaign are available to help you identify the rare lipid disorders that do exist, to help you better understand treatment opportunities and options, and the need to manage your cardiovascular health. Healthcare professionals can also find resources available that will assist in communicating vital information to patients.
An integral part of this campaign is the FCS cookbook, which includes a multitude of delicious recipe options designed specifically for individuals managing FCS. The site also includes informational tear sheets and links to other valuable websites and resources of information. Please continue to check back regularly as we are growing and adding information continuously the different rare lipid disorders.
Designed for patients, this tear sheet explains what FCS is, how FCS is diagnosed and where patients can go for more information.
This tear sheet provides diet and healthy eating tips for individuals living with FCS.
Discuss the need for genetic testing with your healthcare provider. It is not necessary for most. If you have a genetic test, the result may help determine the best treatment and if any of your family members should be tested.
FH is the most common genetic disorder. Approximately 1 in 500 people in the world has a genetic alteration that causes FH. If one parent has FH, there is a 50% chance that their son or daughter will also have it. FH is associated with an increased risk of heart disease.
We are unable to supply Patient Tear Sheets in printed form. Tear Sheets are provided for your convenience and your patients and may be reproduced without modification digitally or in print with copyright and attribution information intact.
The FCS Focus provides information, support, resources and FAQs on FCS. In addition, you can request a Free Guide to FCS on the FCS Focus site that can be printed or provided digitally for additional information and help.
The FCS Foundation site is for FCS patients, caregivers and family members offering information, resources and support. The goals of the site are to build connections and offer resources and support to help FCS patients become informed advocates for themselves and their disease.
LPLD Alliance is the next step in working to meet the needs of patients with LPLD or one of the related conditions.
The National Pancreas Foundation provides hope for those suffering from pancreatitis and pancreatic cancer through funding cutting edge research, advocating for new and better therapies, and providing support and education for patients, caregivers, and health care professionals.
The FH Foundation is a patient-centered non-profit dedicated to research, advocacy, and education of all forms of familial hypercholesterolemia
An organization dedicated to raising awareness of FH and creating a global alliance and partnership center where people of all races, creeds, age and gender can come to find and discover anything they might want to know about FH; to make that information universally accessible and useful to patients and their families, to physicians, nurses and dietitians, corporate, government and communication leaders.
The nation’s leading authority and most trusted source of evidence-based information on the safety of medications and other exposures during pregnancy and while breastfeeding.
Global Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community.
The National Lipid Association (NLA) is a nonprofit, multidisciplinary medical society focused on enhancing the practice of lipid management in clinical medicine.
A patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
Rare Disease Report is a website and weekly e-newsletter that offers an independent voice for the Rare Disease Community. It strives to bring together medical, scientific, investment, regulatory, and advocate professionals interested in rare diseases and orphan drugs.
The mission of the American Liver Foundation is to facilitate, advocate and promote education, support and research for the prevention, treatment and cure of liver disease.
LAL Solace is a non-profit organization who supports those who are affected by Lysosomal Acid Lipase Deficiency. We educate others on the signs, symptoms and important information about what to look for during a diagnosis.
Lipodystrophy United (LU) is an organization of committed individuals living strong with Lipodystrophy (LD). Our mission is to provide an interactive community, facilitating support and education for anyone affected by this rare disease.
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