Alpha-1 Foundation spotlights Rare Disease Awareness at the February Alpha-1 Education Day

The Alpha-1 Foundation kicked off its educational series for 2022 with the Alpha-1 Education Day on Saturday, February 12, 2022. The first of six for the year, Alpha-1 Education Days bring the Alpha-1 community together to learn about important topics that are relevant to the livelihood of those affected by Alpha-1 Antitrypsin Deficiency. Continuing the recent trend of virtual engagement, the education day was conducted completely online utilizing a virtual environment, complete with a lobby, exhibit hall, auditorium, and networking lounges. Participants convened in the auditorium in the morning for a coffee meet and greet session, hosted on a Zoom call, to allow participants to interact.

To recognize Rare Disease Day, which takes place on the last day of every February, attendees wore striped clothing to “show their stripes”, which has become symbolic of rare diseases. Learn more about how to participate in Rare Disease Awareness activities this month. Click here to learn more about Rare Disease Day.

All attendees had the opportunity to view the traditional Alpha-1 101 Lung and Liver presentations that are given at all education days prior to the meeting. This was the first time that Foundation launched this format to allow for more timely sessions at the live event. (LINK TO 101s)

Alpha-1 Foundation President & CEO Scott Santarella delivered the first presentation of the day with an overview of the Alpha-1 Foundation’s activities and mission.

Dr. Robert A. Sandhaus, Clinical Director of the Alpha-1 Foundation, followed with his presentation, “Is My Other Medical Condition Related to Alpha-1?” which explored the relationship between Alpha-1 and other conditions Alpha-1 patients may have. Click here to view.

Other presentations included a pediatric COVID-19 update from Dr. Nooralam Rai of Columbia University Irving Medical Center, and “Alpha-1 Antitrypsin Deficiency – A Rare Disease?” presented by Dr. Igor Barjaktarevic, Medical Director of the COPD Program at David Geffen School of Medicine at University of California, Los Angeles.

The day was concluded with a COVID-19 update from Dr. Jeanine D’Armiento, Chair of the Board of Directors for the Alpha-1 Foundation, where she provided the latest COVID-19 updates as it pertains to the Alpha-1 community. A live question and answer session followed, allowing attendees to ask questions to the presenters on the call. Click here to view the recording.

Thank you to our education day series Platinum Sponsors: AlphaNet, CSL Behring, Grifols, Takeda and Vertex and Silver Sponsors: Accredo and Coram.

The next Alpha-1 Education Day will be held virtually on Saturday, March 26, 2022. Click here to register today.