5 Words on Being Rare

World LGDA Awareness Day

The LGDA and its worldwide partners, LGDA-Europe and Alfie’s Trust, are pleased to announce the establishment of an official Worldwide Awareness Day of May 26.

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

The theme for this first day is 5 Words on Being Rare

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 content submitted by patients, parents, other family members, and friends across social media, in newsletters, and on our websites to spread the message of what it is like to be rare.

Below are 2 sample graphics featuring Jana, one using her photo and the other if she had opted not to share her photo:

How to Participate:

  1. Select up to 5 words from the graphic below
  2. In an email, write a sentence with each word you choose describing feelings you have had in the time since you or your child, loved one, or friend was diagnosed
  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


Using what you send us, we will create graphics similar to the samples above 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 5 words statements, information and photos/videos by May 8, 2017.