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Patient Organisations

With an interest in LPLD and Related Conditions

There are a growing number of organisations and blogs dedicated to or giving support to patients with LPLD.

HEART UK
HEART UK is a charity that primarily supports patients with Familial Hypercholesterolemia but with a  remit that covers patients with other lipid disorders.  HEART UK hosts the first patient information sheets about LPLD written from a patients’ perspective.
HEART UK

LPLD Asociation
LPLD Association was the first formal organisation set up for those living with lipoprotein lipase deficiency. Based in the United States it aims to provide connection, support, education and information to patients, caregivers, physicians, researchers and other stakeholders interested in or impacted by LPLD.  The National Organization for Rare Disorders (NORD), is supporting the development of this organisation and seeking participation from patients and caregivers.
LPLD Association

FCS Foundation
This is a very new patient group being developed in the USA by a group of affected patients.
FCS Foundation

Association de l’Hyperchylomicronemie
This is an organisation set up by parents in Canada.  It has a translate button.
Association de l’Hyperchylomicronemie

FCS Focus
This is the landing page of a site being developed by Akcea Therapeutics who are developing the new drug Volanesorsen.  The company are aiming to provide a reliable source of information about FCS.
FCS Focus

Rare Disease Report – Familial Chylomicronaemia Syndrome
This site was funded by the pharmaceutical company Novartis.
Rare Disease Report

Genetics Home Reference
Genetics Home Reference is the US National Library of Medicine’s website for consumer information about genetic conditions and the genes or chromosomes related to those conditions.
Genetics Home Reference

Orphanet
Orphanet is the reference portal for information on rare diseases and orphan drugs (intended to treat diseases so rare that sponsors are reluctant to develop them under usual marketing conditions), for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.
Orphanet

Patient and Carergiver Blogs
These are the blogs that we are currently aware of. If you are writing a blog and would like it added please contact us. These links are provided for your information only. LPLD Alliance does not edit or endorse any of the content.  If you use the recipes please be aware of the fat content and decide for yourself if they are appropriate for your own eating plan.

Katie
This is a blog by Katie, a British National with LPLD, who lives in Portugal.
Faith is Sweet

(Living with) Lipoprotein Lipase Deficiency
This is a blog about living with lipoprotein lipase deficiency / Fredrickson’s type I hyperlipidemia / Buerger-Gruetz; high triglycerides written by toddler Monica’s Mum.
(Living with) Lipoprotein Lipase Deficiency

If you would like your organisation or blog added to this page email us here.