#LGDAwareness Day 2018

The LGDA and its worldwide partners, LGDA-Europe and Alfie’s Trust, invite you to participate in the 2nd Worldwide Awareness Day on Sunday, May 26, 2018.

May 26 was selected for the awareness date in honor of LGDA Founder Jana Sheets, who was born on that day in 1974.

This year we have invited medical professionals to share with the patient community their perspectives on caring for those with these rare diseases and we will be sharing these on World #LGDAwareness Day 2018. If you would like to share the invitation with your own doctor(s), click here to print.

Additionally, we invite patients and those who care for them to select a word that sums up your feelings when dealing with the medical professionals. It would be great to get some insight from you that we can share during the campaign. We hope this will encourage others to get involved!

The purpose of this day is to raise awareness and share experiences.

During the week leading up to May 26, 2017, we will publish graphics made from the content submitted across social media, in newsletters, and on our websites to spread the message of what it is like to care for those with rare disease. (Click here to see some samples of the content that was created and shared last year.)

How to Participate:

  1. Select at least one word from the graphic below
  2. In an email, write a sentence using your selected word that sums up your feelings when dealing with the medical professionals
  3. Attach a photo of yourself, your child, or your family (optional)
  4. Tell us the patient’s diagnosis and age and where you live
  5. Send the email to channels@lgdalliance.org by May 5, 2018


Using what you send us, we will create graphics that we will share throughout the week via our social media, newsletter, website and other channels to spread the word about these rare lymphatic diseases and the impact they have on affected patients and all those who care about them. We hope those who have lost someone to these diseases will also participate; their stories are important.

We will only use your first name, diagnosis, and general location; for example: Mary – mother of Gorham’s disease patient – USA. We will use the patient’s age if there is room in the graphic.

You may submit more than one photo. Photos should be large with high resolution to allow us to find the best placement of your statement on the image.

You may opt to submit up to 5 short videos – one for each statement you make with your selected words – in which you record yourself making your statement. Any video should be 15 seconds or less – just long enough to record one statement. Video should be clear and sharp with good lighting and no background noise.

Please submit your word and statements, information and photos/videos by May 5, 2017.