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Rare Disease Awareness Month

February is Rare Disease Month and we want to show our stripes and appreciation on this very special LEAP year! Honor someone special to you who is affected by HHT by participating in our annual Kisses for a Cure tribute celebration from February 14 through February 29. This year, Rare Disease Day® will be celebrated on its official and rarely occurring date, February 29th, which occurs only once every four years!

For each donation made (no matter the amount), we’ll honor your loved ones who are either affected by HHT (patients, caregivers and HHT supporters) or who have sadly lost their battle to the disease, by collecting hearts and KISSES with the help of our Zebra friend, Telly! Make the day extra special by adding your loved one’s name and a special message to our tribute wall.

Help us KISS HHT goodbye in honor of those you LOVE!

Add a personal touch and choose a heart color below to represent your loved one when you donate.


Dr. Anthony Anzell



Cathleen Kinnear

"For her years of dedication & enthusiastic support for the HHT Community."

TDC Leaps Crew

"Thank you for your dedication to the HHT Community."

Laurie Edwards

"Happy Valentines Day Mom. I love you."

Luz Casanova

"I love you, Mom. You are an overcomer! Love, Amanda"

Ramona Dobre

"To the strongest woman I know."

Mary Vann

John Bannon

"Your willingness to wage a daily battle against this disease is an inspiration to our entire family! Your efforts do not go unnoticed and we applaud your amazing strength and dedication to living! We love you!"

Courtney Boyer

"❤️Love and miss you Courtney Boyer❤️ Love you, M❤️M"

Jenny Davis

Fay Hendricks

Nicola Firth

"Missing you always and forever xxx"

Roger Madden

"Dad - your strength and perseverance in all aspects of life, including living with HHT, have given me the strength I need to also live with this disease. I am so honored and grateful to be your daughter and I will continue the fight for our family and every other family affected by this disease. I love you forever and I know that you are with me always. Love, Andrea (Poof)"

Zebra - Start

WHY A ZEBRA? A horse is a horse of course, but a Zebra is RARE! If you were to hear the sound of hoof-beats behind you, what type of animal would you expect to see? A horse? Let’s face it, it would be a pretty rare occasion to hear hoof-beats and turn around to see a ZEBRA!

This is the issue that medical professionals face every day when they are confronted with a list of symptoms that, at first glance, could be associated with a number of very common diagnoses. The rare disease community is all too familiar with this situation, and especially the HHT community where it takes on average 25 years to get properly diagnosed as…a Zebra! (HHT Rare).

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