The following presentations were recorded during the 2015 Patient & Family Gathering located in Houston, TX. Most of the presentation slides are also available to accompany the videos. We are pleased to have this information to share with those that were not able to attend the meetings or that wanted to recapture some of the information shared. Thank you to the speakers that volunteered their time and information. Thanks also to the volunteers and staff that were able to create and edit the videos for all to view.
Presenter |
Presentation(s) |
Videos |
Timothy Craig Allen, MD, JD |
Social Media in the Rare Disease World |
Not available. |
Naifa Lamki Busaidy, MD |
ECD & Hormones |
Not available. |
Jean Campbell |
Power of Patient Groups |
The Power of Patient Groups |
Susan Y. Chon, MD |
Not available. |
ECD and Skin |
Maxine Grace de la Cruz, MD |
ECD & Pain Management |
ECD and Pain Management |
Eli L. Diamond, MD |
Braf Negative; ECD & Brain |
Not available. |
Nancy K. Feeley, RN, MS, CRNP |
ECD & Exercise |
ECD and Exercise |
Horiana Grosu, MD |
ECD & Lungs |
ECD and the Lungs |
Saamir Hassan, MD |
ECD & Heart |
ECD and the Heart |
Filip Janku, MD, PhD |
Importance of Clinical Trials |
The Importance of Clinical Trials |
Cynthia Kizer, RN, BSN |
Insurance Appeals |
ECD and Insurance Approval Issues |
Chaplain Richard T. Maddox, BCC |
Facing Key Spiritual Care Issues |
Facing Key Spiritual Issues |
Kenneth L. McClain, MD, PhD |
ECD101 |
ECD 101 |
Omar Ozgur, MD |
ECD & Eyes |
ECD and Eyes |
Susan Robertson, PhD, OTR/L, FAOTA |
Financial Stability & SSI |
ECD and Social Security Applications |
Robert Zieve, MD |
Integrative Medicine |
Not available. |