Patient Perspectives

[vc_row css_animation="" row_type="row" use_row_as_full_screen_section="no" type="full_width" angled_section="no" text_align="left" background_image_as_pattern="without_pattern"][vc_column][vc_column_text]In response to requests for more face-to-face interaction with other families affected by Alport syndrome, ASF hosted several Alport Family Meetings in 2016, now known as Alport Connect Together (ACT) events. Participants left feeling empowered and connected to the Alport community.

The Alport Family Meetings (AFM) provide a unique opportunity for members of our renal community to meet and mingle with other families affected by Alport syndrome and simultaneously learn from the experts. Shannon and her husband attended our Los Angeles event (AFMLA) along with their son,

[vc_row css_animation="" row_type="row" use_row_as_full_screen_section="no" type="full_width" angled_section="no" text_align="left" background_image_as_pattern="without_pattern"][vc_column][vc_column_text]Celina LaBrec-Salmons was the first person to register for the first-ever Alport syndrome Virtual Walk, which was held on June 18, 2016. This is a national event to raise funds and awareness by encouraging people to participate in their own communities.

[vc_row css_animation="" row_type="row" use_row_as_full_screen_section="no" type="full_width" angled_section="no" text_align="left" background_image_as_pattern="without_pattern"][vc_column][vc_column_text]Note: This blog entry was updated August 30, 2019. Those preparing for Hurricane Dorian are strongly encouraged to visit the FEMA website and additional kidney-related emergency preparedness links at the conclusion of this post.   When emergencies strike, we often feel helpless. For patients with renal diseases like Alport syndrome and other conditions requiring special needs, natural disasters and other unexpected events can be especially traumatic.
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