Cure HHT’s 2024 Impact Report

A Year Of Significant Transformation & Progress

Every year is a different chapter in our story – each bringing us closer to our ultimate goal.. But 2024 was defined by new especially significant and meaningful results in moving science and research forward.  This year, thanks to the efforts of our new Therapeutic Development team, we accelerated HHT research to never-before-seen levels and have increased  active HHT therapeutic projects by 300% since 2022. Critical breakthroughs in HHT treatment are just ahead. We are the catalyst that drives science forward, and the types of projects underway are those that will have a tangible impact on care and families impacted by HHT.

The projects we’re now leading have grown in significance, but our mission remains the same: to save lives and improve well-being of those suffering from HHT on our path to a cure. Research, education, public information and advocacy are still the pillars of everything we do, and none of them can happen without the others.

 

“The pace of work and progress in this past year has been incredible to witness. We’re knocking on the door of outcomes that just a few years ago seemed impossible. We have an unbelievable scientific and medical group committed to these projects, but make no mistake — the support of our HHT community is the reason we’re able to do this work.”

– Marianne Clancy, Executive Director

 

 

Donations Fuel Change. 

Donations are the most critical driver of real-life impact. In 2024, 88% of dollars went directly to program services.

• 73% Research
• 9% Education
• 5% Public Information
• 1% Advocacy
• Management only 3% of total expenses

 

This past year, we’ve seen huge returns from our strategic investment in research.

 

Impact By The umbers. 

Our multi-pronged approach to research turns donations into millions of dollars dedicated to innovative treatments, better technology and more effective drugs.

• We’ve invested $1.2MM in 28 seed grants.
• Those investments have been leveraged to receive more than $53MM in additional funding from government agencies to support HHT research.
• That’s a 2,397% return on investment.

 

A Therapeutic Approach. 

This year we doubled down on our therapeutic strategy, driving innovation through partnerships with industry trailblazers and prioritizing a strategic research portfolio ensuring focus on the most meaningful projects for patients.

Key achievements in 2024:

• Introduced HHT Connect, our first ever patient registry
• 1,708 patients attended conferences or virtual education events.
• Launched centralized HHT biorepository to support international research
• Created an online platform to educate provides about HHT
• Protected federal funding for the third consecutive year, contributing to a 44% increase in new patients seen at Centers of Excellence
• Entered year 2 of our directly sponsored Phase II/III pazopanib trial
• 394 CME credits were provided to healthcare professionals in 2024.
• Successfully recruited for the first positive-large scale HHT Study, the PATH Trials – the results of which were published in the New England Journal of Medicine
• Played critical role in helping Diagonal Therapeutics launch with 128M in seed funding, focusing entirely on a curative HHT therapy
• Have more than 6 active partnerships with biotech and pharma focusing on novel HHT therapies.
• Provided a grant to the Broad Institute of MIT and Harvard to support development of a compound that has the potential to reverse disease.

 

Research In Action. 

We continue to make enormous strides in the scope of our research. Just three years ago, Cure HHT had no active trials or research projects underway. Today we have more than ever before, with 13 such efforts currently in progress.

 

New frontiers in publishing. 

We continue to meaningfully grow the community working on HHT, as evidenced by the explosion of HHT medical publications this past year. This hasn’t happened by chance. It’s the result of years of effort. In 2024, we published outcomes from 51 randomized trials in medical journals around the world. It was our biggest publishing year in our more than 30-year history as an organization and will be instrumental in continuing to bring new attention and work to our cause.

 

A donation today helps create tomorrow’s change.