Upcoming Events

Patient-Focused Drug Development Meeting

August 3, 2018 
9:00 AM – 3:15 PM
Hyattsville, MD 

College Park Marriott Hotel and Conference Center


ASF has partnered with the National Kidney Foundation (NKF) for an an Externally-led Patient-Focused Drug Development (EL-PFDD) meeting on AS.
This meeting will bring together AS patients, their care-partners, the US Food and Drug Administration (FDA), and drug developers.The purpose of the meeting is to inform the FDA and drug developers about:
  • What it’s like to live with AS
  • Your experience with treatments for AS
  • What you, the patients, feel is needed in future medicines for this disease, and your thoughts on clinical trials for such treatments.
The FDA will use your input to help in decisions on approving new drugs for AS. Also, drug developers will better understand what’s important to patients regarding new AS treatments, so they can target new treatments for AS.
This is one of the largest steps we will be taking in the development of therapies to treat Alport syndrome! The preliminary meeting agenda can be found on the meeting microsite.
Please help us prepare for this meeting by completing the pre-meeting survey. The survey should take only about 15 minutes. The survey will tell us where you are in the range of AS symptoms, and therefore how much clinical diversity we have at the meeting.
All information provided through the survey will be kept strictly confidential.



``It is the most empowering, positive experience -
connecting with others (who are) dealing with the same things.``
- Former ACT Meet up Attendee

Join us for the next Alport Connect Together Meet up!
Register Now

September 29 – 30, 2018 

University of Texas Southwestern
5323 Harry Hines Blvd, Dallas, TX 7530 


Book Your Hotel Room! Deadline to get the $139 rate is 5 pm CDT, August 28th,
You may access the site to book, modify, or cancel a reservation from now until September 30th.

  • Benefit from new connections
  • Gain educational insights
  • Be the first to receive patient and research updates

Need assistance with travel?

For the first time ever, ASF is proud to offer Travel Stipends for qualifying families. Travel stipends are available for families traveling more than 200 miles to attend the Miami meet up, a $100 per person travel stipend will be offered to help cover costs of travel with a maximum of $400 per family.

ASF’s regional meetings bring together those who have been recently diagnosed with Alport syndrome and those who have been managing the disease for many years. This year we’re bringing back our Program Tracks for parents/adults and for teens and young adults! Our young adult track is facilitated by trained, young patients and patient mentors. We’ll also have fun activities and childcare for children ages 5-12.

Don’t miss a one-of-a-kind opportunity to share information and strengthen our community of support. For more information visit the Family Meetings page of our website. Register here for the event.

Don‘t see an event in your area? Plan one! Contact events@alportsyndrome.org to add your event to this page.

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