Announcement from Cure HHT Executive Director (COVID-19)

Marianne Clancy

A Message from Cure HHT Executive Director, Marianne Clancy

To our HHT Community: Two years ago, we coined the phrase #InThisTogether as part of our annual year-end appeal.  Now more than ever, this simple phrase has been on our minds and is driving all that we do during these unprecedented times surrounding the outbreak of the Coronavirus (COVID-19).  The impact COVID-19 has had on our communities, HHT patients, physicians, and Cure HHT staff has definitely been something we never thought we’d encounter in our lifetime.

With that being said, I wanted to connect with you directly and to put your mind at ease knowing that we are truly #InThisTogether with our entire HHT community as we continue to navigate uncharted territory, not only as an organization, but as a community.

First and foremost, the well-being and safety of our HHT patients, healthcare providers and Cure HHT staff is our top priority and will always be at the heart of every decision we make.  In that regard, we have taken these important measures:

We are following and reporting to our HHT community the continuing updates and recommendations of the Centers of Disease Control (“CDC”) and the World Health Organization (“WHO”) in order to provide you with reliable information surrounding the best practices in avoiding a COVID-19 diagnosis.  The CDC has issued the 5 “To Do’s” (washing your hands, not touching your face, social distancing, staying home if feeling ill, and seeking medical attention if you become symptomatic).  It is important that each of you follow your local state health department’s recommendations concerning personal hygiene, social distancing, and seeking medical treatment above all else.  Your local HHT Centers of Excellence (COEs) will also be following their state’s recommendations, which will trickle down to you and your treatment.

We are actively engaging with our physicians at our North American COEs, keeping you informed of the necessary precautions and treatment protocols in place, if you are exposed or contract the virus.  We fully support our COEs in their well-thought-out decisions regarding routine scheduling of procedures and treatments during this tumultuous period.  Our COEs will continue to monitor and evaluate HHT patients either virtually or in-person for necessary treatments where suspension of treatment could potentially cause life-threatening situations. Our COEs are adhering to their institutions’ policies revolving around COVID-19.  Please know that each of these decisions were made with their patients’ best interest in mind.  While some COEs have cancelled non-emergent appointments over the coming weeks, they stand ready to reschedule those appointments the moment they receive the go-ahead from their administrations and know that their patients are at a significantly reduced or non-existent risk for COVID-19. Please check in with your local COEs for individual direction regarding visiting their centers.

Taking into consideration the recommendations of the CDC and many local and state-wide restrictions on public events, and to adhere to all social distancing strategies in place, we have temporarily suspended all of our Cure HHT sponsored events across the nation, which includes our Walks, Patient and Physician Conferences and Walk and Talk Series.  Please know that we are as disappointed as you that we had to take these measures and are unable to connect this spring in person.  We know that this is the biggest way, as an organization, we can help reduce the spread of this virus.

In the meantime, we are a fully functioning staff and are moving forward with all of our exciting 2020 plans including more clinical trials, dedicated research focused on new treatments, overhaul and revamping of our Resource Library (coming your way this April 2020), the opening of new HHT Centers of Excellence to add to our existing twenty-six COEs, educating medical professionals about HHT, hosting informative Webinars on topics of interest in our HHT Community, creating patient advocacy groups in your local communities, and connecting daily on all six of our social media platforms (Facebook, Instagram, Twitter, Vimeo, YouTube, Reddit).  Now more than ever, we encourage you to connect with us through all of our communications—email, social media, webinars, and even good old snail mail!  Fill out our registration and impact survey form, found on our website here so we can better serve you.  We don’t want you to miss a single announcement, resource, recommendation or connection. We are here for you —every uncertain and daunting step of the way!

We are busier than ever and are not slowing down.  We won’t stop, even in these unsettling times as we owe it to our patients—the reason behind everything we do.  Our goal over the coming weeks, while this situation continues to evolve, is to remain consistent, transparent and a place of solace and hope for our HHT Community.

In love and health,


Marianne

(click here to see all Cure HHT COVID-19 updates and information | Traducción Española)