Share Your Story
Telling other people what hereditary hemorrhagic telangiectasia (HHT) has actually been like reaches families still waiting for a diagnosis, and clinicians who have never met the condition. You decide what goes in, and you approve every word before it publishes.
Tell us what you want other people to know
There is no word count and no format to follow. A few paragraphs is plenty. If you are not sure where to start, the questions people find most useful to answer are: how long did it take to get diagnosed, what finally led to the answer, and what do you wish someone had told you earlier.
Would you rather write to a person than fill in a form? Email marcomms@curehht.org and we will take it from there.
No surprises
What happens after you send it
Nothing moves to the next step without you.
1
You send it
Through the form above, or by email if that is easier. Write as much or as little as you want.
2
We come back to you
Usually with a few questions, sometimes with a suggestion about what to leave out. This is a conversation, not an editing process done to you.
3
You approve it
You see the finished version before anyone else does. If it does not sound like you, it does not run.
4
It stays yours
We may use it in a newsletter, on social media, or in awareness materials. We will tell you where. Change your mind later and we will take it down.
Sharing a story is not the only way to help, and it is not right for everyone. If you would rather stay private, advocacy, awareness, and research participation all move the same work forward.