BENEFITS OF BEING A MEMBER OF HHT IRELAND …... Click Here
We’re excited to announce that this year’s Annual Patient Forum will take place at Letterkenny University Hospital on Saturday, May 17th!
Your support is crucial! If this event is a success, we hope to use it as a model to bring similar forums to hospitals closer to HHT families nationwide.
HHT IRELAND | EMPOWERING LIVES
HHT Ireland’s Commitment to Awareness, Support, and Research
What is HHT?
Hereditary Hemorrhagic Telangiectasia (HHT) is a rare genetic disorder characterised by abnormal blood vessel formation, leading to frequent nosebleeds, skin telangiectasias, and arteriovenous malformations in various organs (AVMs).
Dedicated to improving lives
HHT Ireland is dedicated to improving the lives of individuals and families affected by this condition through a comprehensive approach that encompasses awareness, education, support, and research. Its vision is to create a world where those living with HHT have access to early diagnosis, effective treatment, and a supportive community.
Raising Awareness
Our aim is to raise awareness among the public and healthcare professionals, to ensure that individuals with HHT receive accurate information and high-quality care, and drive research efforts towards better treatments. HHT Ireland’s actions include organising educational events and support groups, advocating for improved healthcare policies and collaborating with international HHT organisations.
Fostering a network of support
By fostering a network of support and resources, HHT Ireland aims to alleviate the challenges faced by those with HHT and to make significant strides in combating this often-overlooked condition.
Living with HHT
Clare Brown shares her emotional story with Sharon from HHT Ireland about the challenges her son met when he presented with severe pains and diagnosed with a Ruptured Pulmonary AVM.
World leaders working together to drive the search for better treatments
Meet Little Red, a friendly adventurer teaching kids about HHT
A condition that can cause small blood vessels to form differently. Little Red explains that while these changes can sometimes cause nosebleeds or other symptoms, knowing about HHT helps kids and their families take the best care of themselves. Join Little Red on his adventures to learn more about HHT and how to stay healthy and happy!
Help us save lives by raising awareness
How can you help!
Rare Barometer Survey
Living with HHT presents unique challenges that can impact various aspects of life. To better understand and address these challenges, EURORDIS – a European Organisation for Rare Diseases – has launched a significant initiative: the Rare Barometer survey titled “Impact on Living with a Rare Disease.” This survey is a crucial tool that aims to gather insights directly from patients and their families to inform policy makers, healthcare providers, and the broader community about the real-world impacts of rare diseases like HHT.
By working together we can find effective solutions to improve HHT patients in their daily lives.
Your life story is valuable in making a difference, the more we talk about it, the more we can change things.
TOGETHER WE HAVE THE POWER TO CHANGE THINGS
You can send us your story to info@hhtireland.org or fill in the form below