LYMF Foundation Patient Community

Let's Get to Know Each Other!!!

We, the LYMF Foundation, would like to build a community for our patients to interact and become familiar with one another.   We are providing both a community forum for discussions as well as patient pages .

Each person’s information will follow a specific pattern, making it easier to obtain information about one another and realize common interests.  This will also inform our members of people in similar and different situations .

We will also have a memorial section for relatives of the patients to provide the same amount of information as others to help the rest of the community become familiar with them and understand what those patiets went through. 

If a member is interested in updating or changing their page, they will need to submit to the foundation the modified information and we will be happy to make those changes.

It is important to understand that the LYMF Foundation website is available to anyone with Internet access and therefore is not private or confidential. We will need to verify identity and receive personal consent in order to post any information on the LYMF Foundation patient community section of the LYMF website. Protecting our members' privacy is our highest priority and it is our promise to not divulge any information about our members without consent to do so.  Only our designers are able to make changes to the website and they will be required to verify each member’s information and their consent before any modifications can occur.

The pages will be designed with the following features:

1. Send up to five photographs that will be posted with requested descriptions .
2. Give any amount of information.   The following subjects serve as guidelines – none of the questions are required to be answered .
1. Name and nicknames (if any)
2. Age and birthday
3. Immediate Family and close friends.   Adults may include spouses, significant others, children, and anyone else who is important and may help with the member’s illness.  Children under the age of 18 should have their parents assist them in order to provide as much information as they are comfortable with sharing.
4. Feel free to share any special personal non/LYMF things you may want to share – such as occupation, favorite things, hobbies, interests, etc. (any information that is wanted for other people to know about that aids in familiarizing oneself with other people.
5. Diagnosis?   LYMF/Gorham’s/Both
6. Any other strange diagnoses?
7. The Age and year you were diagnosed?
8. Any other information you may like to offer.

Please submit all requests and questions to: PatientPages@lymphangiomatosis.org

Or by mail to:

Patient Pages
C/o The LYMF Foundation
5400 Ready Avenue
Baltimore, Maryland 21212

First Patient Page - In Memory of Luca

As of August 14, 2007 - we have our first patient page posted. A new link tab will be added to our menu above in the very near future. To parents of children with this disease - it is important for you to understand that this is a memorial page for a child that recently lost his battle with this disease.

It is essential that you understand that this is the most feared outcome of this disease - but not the only outcome. The patient's story reinforces the urgency for us to pull together all of our resources (information and fundraising) - so that we can urge researchers to explore this disease to find effective treatments and ultimately a cure...

You can read about Luca Zieren at: Luca Zieren - Memorial Web Page

We will have two section for patient pages - one for patients who are still battling this disease... and another for the patients who have lost their battles.

Please think about submitting your/your child's information so that we can get to understand the different journeys each of us goes through. It is so important for anyone interested in learning more about this disease to have the stories of our different patients.