Patient Support Services and Patient Registry

A major component of the mission of the LGDA is patient support. This includes two very important programs: our patient matching program that helps patients and families connect with one another and our awareness program that helps to raise awareness of lymphangiomatosis and Gorham’s disease among professionals and the public. In order to streamline these programs and maximize their effectiveness we have created a standard registration form for patients. We encourage all of our patients to register. It helps us help you.

 

 

About our Patient Matching Program

Lymphangiomatosis and Gorham’s disease are extraordinarily rare conditions and a strong support system is invaluable in helping patients and their families cope with the diagnosis and living with the conditions. One way the LGDA assists patients and families in finding this support is by facilitating introductions to others.

Using our patient registry forms and other resources our patient support team looks for patients of similar age; undergoing the same or similar treatment; and/or living nearest to one another and, when both sides are agreeable, makes introductions. Because the conditions are so rare, an exact match is unlikely, but we do try to find the closest match for each situation. Many of these matched patients and families form strong bonds and report tremendous relief in knowing they are not alone and having someone with whom they can share their feelings, hopes, fear, and frustrations. Some components of our patient support resources, such as our Facebook page and Discussion Forum also provide a way for our patient community to interact and offer support to one another, but patient matching fosters the formation of the close relationships that are critical in helping people to cope with these rare conditions.

We also provide the matching assistance for families who have lost a loved one to one of these diseases. If you are interested in participating in the Patient Matching Program, please complete and submit the patient registration form and someone from our support team will contact you.

 

About our Awareness Program

For real progress to be made in the diagnosis and treatment of lymphangiomatosis and Gorham’s disease these conditions must be on the list of conditions that are considered by physicians when evaluating a set of signs and symptoms. This list is known to professionals as differential diagnosis. Getting a condition on this list is no small task. It requires a change in the thinking of medical professionals, beginning with medical educators. The LGDA does much to reach these professionals and make an impression on them about the importance of including these conditions in their differential diagnoses.

What we do to raise awareness:

• Maintain this web site
• Sponsor meetings of professionals, such as the First Consensus Meeting on Lymphatic Anomalies held in February 2011 in Boston
• Attend meetings of national and international professional organizations, talking with other attendees and setting up information booths
• Maintain member organization status with other organizations doing work that is relevant to the LGDA community
• Send information to individuals and organizations on our mailing list about lymphangiomatosis and Gorham’s disease and how it impacts the lives of patients and their families.
• Communicate with physicians and researchers around the world, bringing to their attention issues raised by our patient community
• Maintain a Facebook page and Twitter
• Promote what our community members are doing to raise awareness by publishing original articles and links to news items in our e-newsletter, Channels, and on our web site and Facebook and Twitter pages
• Participate in Rare Disease Day

Organizations LGDA works with:

• LGDA – Europe
• American Thoracic Society – member, Public Advisory Roundtable (PAR) and Council of Public Representatives
• Rare Bone Disease Patient Network
• Lymphatic Research Foundation (LGDA President Jack Kelly is past member of the LRF Board of Directors)
• National Bone Health Alliance
• Lymphatic Malformation Institute (LGDA President Jack Kelly is a member of the board of the LMI)
• National Organization of Vascular Anomalies (NOVA)
• National Organization for Rare Disorder (NORD)
• Genetic Alliance
• NIH/NHLBI Public Interest Organization
• Rare Disease Day
• CaringBridge

 

About our Patient Registry

The LGDA registry form was created in order to streamline our Patient Support Programs. In order to raise awareness of these diseases the information we use must be as accurate as possible, so we created a standard form that asks the same questions about every patient. The information about patients who have died as a result of these conditions is also vital to the mission of raising awareness and increasing understanding, so we encourage those of you who have lost loved ones to complete the registration for them. We also use this information to match patients (and families) who indicate on the form that they wish to be introduced to other patients.

A few things to know about the form and how we use your information:

• The same form is used for both our Awareness Program and our Patient Matching Program, which is part of our Patient Support Program.
• The form helps us count the number of patients with lymphangiomatosis and Gorham’s disease, which is used in e-newsletters, mailings, fundraising efforts, and other ways to raise awareness of these diseases.
• We evaluate the information in the forms to determine how many patients fit into a given category. For example, how many females under age 15 or how many patients have used interferon.
• We share only the numbers in the same ways we share the patient count in order to make people aware of the impact these diseases have on patients and their loved ones.

What we do not do with your information:

• We never share your personally identifying information (names, addresses, email, etc), with anyone outside the patient support team and board of directors without your written consent.
• We do not sell or share our mailing lists

To complete the LGDA Patient Information Form, click here.

For more information about the registry, send an email to Registry@LGDAlliance.org