SAVE THE DATE!
2016 Alport Family Meetings
We are excited to announce a powerful patient engagement initiative for 2016—and beyond! The Alport syndrome Foundation will be hosting three Alport Family Meetings at strategic regional locations across the United States. These two-day meetings will provide vital information and connections for both newly diagnosed and seasoned patients and provide program tracks for parents/adults and one designed specifically and separately for teens and young adults. This track will be facilitated by trained fellow young patients and patient mentors! We will also have fun activities and childcare for children ages 5-12.
- Children’s Hospital Los Angeles, CA (May 21- 22, 2016)
- Washington University, St. Louis, MO (July 23-24, 2016)
- East Coast location TBA (Fall 2016).
Registration information for each meeting will be announced soon and will be sent to everyone registered with ASF.
The Alport Family Meetings will:
- Educate you (our Alport patients and families) on Alport syndrome and disease management
- Give access to leading experts and researchers
- Provide emotional support through connection with other patients, families, and medical experts
- Give guidance on how to self-advocate
- Share your critical role in accelerating research
- Facilitate conversations with ASF, the patient registry and clinical studies
- Build an empowered and connected Alport syndrome Community