Get Involved

There are many ways to support the mission of Cure HHT. We need people-power to fuel our many initiatives, from influencing our legislators on Capitol Hill, to planning local fundraisers and creating a local HHT networking group to helping educate the public. Contact Cure HHT to learn more about current opportunities at 410-357-9932 or [email protected].

Cure HHT Team

You are invited to join the Cure HHT Team grassroots fundraising community that is committed to finding a cure for HHT! There are two ways you can be a member of the Cure HHT Team.

camera1. Join an existing Event
2. Start your own Cure HHT Team Event!

Plan an event in your community to raise funds to support the Foundation and to raise awareness about HHT. There are many opportunities and types of events -- from letter-writing campaigns and bake sales garage to 5K walks and golf tournaments. Find out how you can help raise funds with friends and have fun with your own community!

Legislative Advocate

Educate our nation's legislators about HHT and voice your concerns to help shape policies that encourage research and other issues that relate to your life with this condition. Members of the HHT Foundation can travel to Washington, DC or meet locally with Representatives and Senators to educate them about HHT and advocate for federal funding for HHT research and treatment programs. The Foundation often sends out legislative alerts through email to members. Foundation staff can provide information on how to speak to your legislators either locally or on Capitol Hill, or develop letter-writing campaigns. By participating in these activities, you can make a difference.

Share Your Story

Articles in newspapers and televised news segments about a genetic condition like HHT become more powerful when they feature someone with the disorder. If you are interested in being interviewed by the media to help educate the public about HHT or you'd like to tell your story in the Cure HHT newsletter, please contact us at 410-357-9932 or [email protected].

Join the Blog!

We have a blog for our HHT community to allow for patients, families, friends, doctors and supporters to share their experience living with this disease, while giving a voice to this small, but mighty community.

To check out our blog, What the HHT?, click here!

Interested in contributing as a HHT blogger? Contact us at 410-357-9932 or at [email protected]

Local Media Volunteer

Have you ever wondered why there aren't more articles about HHT or genetic conditions in the newspaper? Do you think there is a doctor or medical specialist you know who should be interviewed on the local news about HHT? Do you want see HHT move beyond the realm of medical literature and into the arena of popular media? Regional groups and HHT members can be quite effective in persuading their local media to present articles and television segments about HHT.

National Conference Volunteer

The success of the HHT Family Conferences held in different cities every two years depends greatly on volunteer participation, especially from people who live in the area. HHT staff will work with local groups, or any interested individuals, to identify opportunities for volunteer involvement. Various positions are available. These are just a few needs; please contact Cure HHT at 410-357-9932 if you are interested in learning more.

Welcome Bags 
Prior to a conference, volunteers collect items representing highlights of the host city for the registration welcome bags.  Welcome bags and notebooks are collated by volunteers just prior to the event.

On-site Help
Can you provide background music for a reception to welcome attendees? Help set up or break down the registration and resource area? Help staff at the registration desk? Be a workshop recorder or monitor? Assist with the silent auction? We need your help to make every conference successful.

Conference Fundraising
The Gala Event on Saturday evening is a fun way to celebrate all that we've learned and get to know our HHT family members better. It is also a way to raise awareness of HHT by soliciting support from local businesses and corporations. Conference fundraising allows the Foundation to defray conference expenses and reduce registration fees for attendees.