Goodwin’s Annual Rare Disease Symposium 2024

March 13, 2024 | 12:00 PM - 5:15 PM ET
Goodwin Boston, 100 Northern Avenue, Boston, Massachusetts


Goodwin’s Life Sciences team invites you to its Annual Rare Disease Symposium in Boston on March 13, 2024. Join us for an afternoon of engaging fireside chats, inspirational presentations, and networking with your peers in the rare disease community. This year’s program will include speakers covering the patient, advocacy, policy, research, and CEO’s perspectives.


12:00 PM – 1:00 PM EDT | Welcome & Networking Lunch

1:00 PM – 1:30 PM EDT | The Patient View

Ken Rudd, Board of Directors, Children’s Tumor Foundation

1:30 PM – 2:00 PM EDT | Fireside Chat – The Policy View

Karin Hoelzer, Director of Regulatory Policy, National Organization for Rare Disorders (NORD)
Matt Wetzel, Partner, Goodwin

2:00 PM – 2:30 PM EDT | A Presentation from Dr. Lewis Fermaglich, Medical Officer, FDA Office of Orphan Products Development

2:45 PM – 3:30 PM EDT | Fireside Chat – The Research View: Recruiting Rare Patients

Dr. Amel Karaa, Director, Mito Clinic & Lyosomal Disease Program, Harvard University
Susan Abedi, Chief Strategy Officer, Medical Knowledge Group, 81qd
Julie Tibbets, Partner, Goodwin (Moderator)

3:30 PM – 4:00 PM EDT | Fireside Chat – The CEO View

Michelle Werner, CEO, Alltrna
Danielle Lauzon, Partner, Goodwin

4:00 PM EDT | Closing Remarks

4:00 PM – 5:15 PM EDT | Networking Reception