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Join the Lymphatic Research Foundation Patient Registry

PostPosted: Mon Nov 08, 2010 12:40 pm
by ma1290
Hi all, just wanted to let you know that there is a registry for lymphedema patients coordinated through the Lymphatic Research Foundation. You can join it here: http://lymphaticresearch.org/main.php?menu=patients&content=patient-reg-new

The purpose of the registry is stated on the website as:
This registry is a confidential database that contains information about individuals who carry the diagnosis of a lymphatic disease or of lymphedema. This comprehensive registry will serve as a repository of information that will enhance the future ability of health care professionals to accurately identify, categorize, treat and prevent these diseases.


LRF's immediate goals are to increase public and private funding for lymphatic research and to increase public awareness.

Adam

Re: Join the Lymphatic Research Foundation Patient Registry

PostPosted: Wed Nov 17, 2010 12:14 pm
by DeafEskie
Adam, THANK YOU for posting this... I will need to share my story over in the introduce y ourself area... have not had a chance. But I will go ahead and briefly state that I have congenital rubella syndrome, along with a litany of other diagnoses, such as Psoriasis, Psoriatic Arthritis, Fibromyhalgia, glaucoma, premature ventricular contractions (heart--an arrythmia), hypothyroidism etc etc. The list is a long one. So I am a firm believer in research. I immediately went to the website but had problems with registering as a new user. Apparently the site is only IE friendly or something like that.... I did contact them so wait and see what they say. I went ahead and joined the mailing list... I strongly urge others to do this also. THe registry is one thing... but we also need to eduate ourselves bout this disease. So forgive me.. but I am gonna lurk for a while as I have so much extensive info to read here. I realize I ahve a LOT to learn--its mindboggling! I also suspect a very special friend of mine err two of them... both in wheelchairs.... have lymphedema. My career of chooice is actually advocacy... and I am pretty good at that having been deaf-blind all my life.

So, thank you for posting this.