15th HHT International Scientific Conference
The 15th HHT International Scientific Conference will take place in Mandelieu-la-Napoule, France from October 15-19, 2024. Connect with researchers unraveling the mysteries of HHT mechanisms of disease and discovering potential therapies for patients around the world. Registration is now open! Learn more >>
Read More
Leaving a Lasting Legacy Through Planned Giving
One of the most powerful ways to contribute to Cure HHT’s mission is through planned giving, such including Cure HHT in a will or living trust, establishing a life-income plan, or naming us as a beneficiary in an insurance policy. For those passionate about supporting causes close to their hearts, planned giving offers a powerful opportunity to make a lasting impact for generations to come.
Community members who have remembered Cure HHT in their estate plans join an honorary group we call “The Cornerstone Society,” a membership that signifies our warm appreciation of your lasting contribution.
Read More
Send hearts & kisses this special Rare Disease Month!
February is Rare Disease Month and we want to show our stripes and appreciation on this very special LEAP year! Honor someone special to you who is affected by HHT by participating in our annual Kisses for a Cure tribute celebration from February 14 through February 29 This year, Rare Disease Day® will be celebrated on its official and rarely occurring date, February 29th, which occurs only once every four years!
Dr. Anthony Anzell Presented with $20,000 Research Grant
The University of Pittsburgh’s Dr. Anthony Anzell Presented with $20,000 Research Grant from Uplifting Athletes Dr. Anzell is among 10 rare disease researchers to be awarded a grant at Uplifting…
Read More
Cure HHT Canada now registered as a charitable organization in Canada
We are excited to announce the establishment of Cure HHT Canada as a registered, tax-deductible charitable organization in Canada! We heard your feedback on how important this designation is to you and we’ve worked diligently over the last two years to reach this milestone. The establishment of Cure HHT Canada marks a concentrated effort to expand and increase our support of our community in Canada!
Read More
E-News: Insider Connection
Check out our latest E-News! Delivered monthly, straight to your inbox – stay up to date on all things HHT including research, clinical trials, webinars, awareness, educational opportunities and more!…
Read More
Important FDA Update Regarding Iron Infusions
There’s been a change to the safety label for Injectafer®, an iron infusion often used to treat iron deficiency.…
Read More
Volunteers Needed! Join Cure HHT on Capitol Hill
We are calling upon volunteers to Join us in Washington, DC, for HHT Hill Day and be the voice…
Read More
Cure HHT’s 2024 Impact Report
2024: A Year of Significant Transformation and Progress Every year is a different chapter in our story – each…
Read More
Press Release: Diagonal Therapeutics to Present Data at ASH 2024 Demonstrating the Economic and Clinical Burden of HHT
Diagonal Therapeutics — who has raised $128 million in Series A funding to support their sole project, a curative…
Read More
Press Release: Vaderis Receives FDA Fast Track Designation for Treatment of HHT
The below press release was issued Monday, Nov. 18 by Vaderis Therapeutic, and is substantial news for our community. Cure HHT…
Read More
A Monumental $128 Million Step Forward for HHT Research
Today is a monumental day for HHT. The new biotechnology company, Diagonal Therapeutics, officially launched and we wanted to share more about why this is news you simply can’t miss!
In short, Diagonal’s lead program is focused on developing an innovative treatment not just to alleviate the symptoms of HHT – but using antibodies to reverse the formation of vascular malformations altogether. That’s right, there is now a biotechnology company, backed by $128 million in Series A financing, focused entirely on a curative HHT therapy.
For months, Cure HHT has been collaborating with Diagonal’s management team to help make this day a reality. We have connected them to leading HHT scientists to help them further develop their program, and have spent countless hours meeting with venture capital firms to educate them on the burden of this disease and help Diagonal secure funding to launch.
Read More
BBC News: Jersey woman calls for more awareness of rare condition
BBC Jersey (UK) Jersey woman calls for more awareness of rare condition – “A Jersey woman who has a rare genetic condition that affects her blood vessels is calling for greater awareness of the disorder…Chelsea Ford, 27, is the only diagnosed case in Jersey but it is believed to affect about one person in every 5,000. “The fact it goes so undiagnosed, there could be people who do have it and don’t know what is wrong,” she said.
Read More
Donegal News: Letterkenny man shares story to mark Rare Disease Day
Donegal News (Ireland). Letterkenny man shares story to mark Rare Disease Day – “Letterkenny man Michael MacGinty, who suffers with a rare blood disease, has shared his story to mark Rare Disease Day. He highlighted the importance of having a conversation about rare diseases, which he says are not as rare as rare sounds.”
Read More