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 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 small activities such as garage or bake sales and car washes to larger events such as walk-a thons and golf tournaments. Find out how you can help raise funds with friends and have fun in your own backyard!

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 Lauren Linhard at 410-357-9932 or [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.

Regional Networking Alliance

Join an HHT Regional Networking Alliance or start one in your community. There are no limits to what can be accomplished when you enlist the power and potential of individuals working together for a common purpose. A Regional Networking Alliance can provide a forum for individuals to share their common concerns and experiences. Regional Networking Alliances are critical to the mission of Cure HHT. Each Alliance will set their priorities. Typically these priorities will focus on the following:

  1. Support and educate of HHT patients
  2. Educate your community and physicians about HHT
  3. Organize community events to raise funds for the HHT Foundation's mission: Education, Research and Advocacy

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.