By Cassi Friday
Hi friends! I hope everyone finds themselves doing well as we roll into fall. I’d like to use this blog post to talk about the CureHHT website and how great of a resource it has become for me and my family as we navigate life with HHT.
Unlike other diseases that may have multiple ways to get information, HHT is uncommon and CureHHT.org is really the central hub for HHT information. You can find information on the website about the disease itself, the people who research and treat the disease, and how to cope with the day-to-day of living with HHT.
First, you can search almost anything within the site and get right to it by using the search bar at the top right of the page. This is definitely the quickest and easiest way to get the information you are seeking. But what if you don’t exactly know what you are looking for? I’d like to walk through the highlights and my favorite features of the site.
If you are newly diagnosed with HHT, visit About HHT and click ‘Newly Diagnosed’ on the left of the screen. This will guide you through the steps to educate yourself, your physician, your family, and help figure out how to manage your care.
If you’d like to know more about HHT and how it affects a specific body system, under Resources, ‘HHT Topic Breakdown’ on the left of the screen, will provide links to various topics concerning different body parts. If you are curious about how HHT affects pregnancy, for example, you can find fact sheets, recent literature, and frequently asked questions under this part of the webpage.
Also under the Resources page, are ‘Webinars’ and ‘Fact Sheets’. These are two of my favorite and most visited pages at curehht.org. Every month, CureHHT hosts a webinar on a relevant HHT topic. These range from current research or clinical guidelines for HHT to how to speak to your child’s nurse at school. All webinars are presented from professionals in the field and can be viewed after the event. Webinars are also planned months in advance. It is nice to watch them live so you can ask the presenter questions in a chatroom-like setting.
The fact sheets are an amazing resource for quick, to-the-point information about HHT. Use these for yourself, print them for your children, and give them to the medical providers that care for you and your family.
Another super neat resource page is ‘Transportation to Treatment’. If you need to get to your physician or travel to an HHT Center for evaluation or treatment, this page provides a list of resources that can help get you there. From non-profit organizations that will help cover the cost to resources that will help you navigate difficult travel situations, this is a great resource for folks who have to go a long way to get treatment.
My personal favorite part of the website is the Research page. As a scientist and caretaker of those with HHT, I enjoy reading the current literature and summaries of the scientific conferences. These are all available under this part of the website. Research is the absolute cornerstone of how we will Cure HHT! Under this page, you can look for clinical trials in which you may be eligible to participate. Participation in research is an essential part to help find a cure for this disease. I would definitely check it out if you haven’t before!
Finally, none of these resources or advancements in the field are possible without donations. Unfortunately HHT is an uncommon disease. It doesn’t mean that people who have HHT are less important than people who have other diseases, but it does mean not a lot of government funding is allocated for HHT research since it won’t impact as many people. CureHHT.org relies on our donations to help put together this website, these resources, and also to help fund scientists trying to advance understanding of this disease. There are many ways to donate and they can all be found by clicking ‘Donate’ at the top of the screen from any page.
What are your favorite features on the website? Are there any pieces missing that you’d like to see?