Event Details

General Details

DATES: Tuesday, June 28th and Wednesday, June 29th 
TIME: 1pm-3:30pm EST

Location

ZOOM LINK: Please register to receive the Zoom Link. 

ALF will bring together rare liver disease stakeholders – patients, caregivers, hepatologists, primary care providers, patient advocacy organization personnel, and industry representatives – for a four-hour virtual Summit to identify solutions for improving the health outcomes of individuals with rare liver diseases. This meeting will focus on answering the following questions:

  1. How can people avoid misdiagnosis/achieve earlier diagnosis?
  2. How can we educate more people about genetic testing and best address concerns about stigmatization?
  3. How can we reduce the patient burden and improve the overall patient experience?
  4. Can telemedicine play a role?

We will also explore patients’ and caregivers’ views on currently available treatment options, daily functioning/quality of life issues, telemedicine, care coordination, and the liver transplantation process. To facilitate the discussion, we will engage a communications consultant with a high level of knowledge of rare liver diseases as well as experience moderating thought leader meetings and providing qualitative analysis.

 

Previous
Next

Rare Disease Summit Agenda

Day One- June 28th

1:00pm – Welcome

1:05pm –  Opening Remarks: Dr. Theo Heller

1:05pm – Featured Speakers: Dr. Theo Heller + Patient Advocates

2:00pm – Break Out Session Led by: Dr. Nehna Abdul Majeed and Dr. Asif Hitawala

This breakout session will address the following questions:

  1. How can people avoid misdiagnosis/achieve earlier diagnosis
  2. How can we educate more people about genetic testing and best address concerns about stigmatization?

2:40pm – Group Discussion

3:00pm – Closing

Day Two- June 29th

1:00pm – Welcome

1:05pm – Opening Remarks: Dr. Strazzabosco

1:10pm – Panel Discussion featuring: Dr. Asai Aki, Cincinnati Children’s Hospital, Dane Christiansen, Managing Partner at Health, and Medical Counsel, LCC, Joanne Hatchett, Medical Science Liaison at PSC Partners Seeking a Cure, Scott Santarella, President, and CEO of Alpha-1 Foundation

2:00pm- Break Out Session Led by NIH Fellows: Dr. Nehna Abdul Majeed and Dr. Asif Hitawala. 

This breakout session will address the following questions:

  1. How can we reduce the patient burden and improve the overall patient experience?
  2. How can telemedicine play a role?

2:40pm – Group Discussion

3:00pm – Closing

*Subject to Change