Rare Disease Awareness Month

February is Rare Disease Month and we want to SHOW OUR STRIPES in a big way! During our Kisses for a Cure tribute celebration from February 14 through February 28 (Rare Disease Day®), 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 KISSES with the help of our Zebra friend, Telly. Your loved one’s name and special message will be added to our tribute wall below.

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


Dr. Anthony Anzell



Tribute Wall

Cathleen Kinnear

"For all your years of dedication to the HHT community. Thank you!"

Dr. Anthony Anzell

"For your boundless compassion and drive in supporting Cure HHT in every imaginable way! Researcher, Educator, Fundraiser, Board Member, Volunteer."

Harry & Jamie Spillet

"To our friends across the pond for their incredible efforts in spreading HHT Awareness and raising funds to support our important work!"

Dr. Beth Roman

"For dedicating your life’s work to finding a cure for HHT!"

Jay Goldberg

"In beloved memory."   "With love."

"May his memory be a blessing and an inspiration to the family."

Gwen Olitsky

"In blessed memory."

Oscean Letersky

"For the countless volunteer hours you give in helping Mom and Cure HHT! I love you!!"

Robin Sasser

"Blessed in friendship"

Skotheim, Stewart, Forsberg & Farden families!

"Stay strong till we find a cure or better treatment, it will come."

Brenda Rose Girling

"Love you Forever Mum."

Gary Sergott

"Happy 75th Birthday! We all wish you good health and wonderful memories to be made in the years ahead."

Andrew Girling

"We miss you everyday Bro."

Nissan Family

"Thanks for your showing amazing strength and courage to continue to fight."

Michael Roush

"Thank you for the HHT drs that are so dedicated to this disease. Mike has been Battling HHT for over 10 years."

Bob Jacobson

"Forever in my heart."

Betty Ann Larkins Stephens

Terry Thompson, Jr.

"Happy birthday Terry Wishing you a great day on the 23rd."

Pat Szyman

"The world and certainly our neighborhood are much less bright and fun without Pat."

Rick Miller

"We will always remember our very first friend in Boston…and all the times we shared!"

Robert Berkman

"In appreciation of your long time work on behalf of the organization and those afflicted with HHT."

Irene Zeno

"I miss you Mumsy, and I know you are with me, and I am ok."

Renee Dupuy

"My Beautiful Wife Renee battled until the end with HHT. A mother of 2 with our son Aaron also having HHT. Forever Loved and Sady Missed. Your Loving Husband, Tommy."

Cure HHT

"Thanks to all who have been so patient with my questions. Your support and guidance help me navigate this challenging journey. Hugs to all of you."

HHT Foundation

"Thank you for your dedication and hard work for all of us."

Courtney Rogowski Boyer

"Always in our Hearts."    "Forever in my heart…"
"God eased your struggle with HHT, but broke our hearts. We miss you Kei. In blessed memory"

Joanna Spangler

"For my lovely sister 💕. Joanna Spangler who died Christmas eve at 60 years old of HHT related causes."

Michael J. McCrowe

"Your friendship, love, strength, courage and guidance through HHT are what keeps your family fighting for all of us with HHT for better care and understanding."


"To my beautiful niece, your strength & courage is amazing stay strong a cure is on the way!!"

Monica J. McCrowe

"Your friendship, love, strength, courage and guidance through HHT are what keeps your family fighting for all of us with HHT for better care and understanding."

All who improve the lives of us with HHT

Brittany G.'s Family, Friends, and Doctors

"For my loving family, friends, and doctors who have been by my side through everything and always supported me! Thank you and love you all!"

Jack DeVizia

"So much love for Jack #kisshhtgoodbye"

Diane Mazza

"Scars can not dampen your Beauty, they are the roadmap to the story of your life. Keep Smiling!"

"To my Daughter-in-law who inspires us. She never knew till she had her 3rd Son 29 years ago she had HHT. She has her own illness but helps me and others when we need help. Love her with all my Heart."

"Best mom in the world, love you."

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).