ASF Advocacy Conferences

ASF Advocacy Conferences

The Alport syndrome Foundation works closely with other organizations to improve the lives of patients impacted by kidney diseases and rare diseases like Alport syndrome. Check out the exciting places we’ll be in the next few months!

ASN Kidney Community Advocacy Day
September 10
More than 100 advocates from 16 kidney organizations met in Washington, DC, today to advocate on behalf of kidney patients. The event was hosted by the American Society of Nephrology (ASN), and brought together healthcare professionals in nephrology, nursing, dialysis and transplant care, as well as various patient organizations like ASF. Patients and healthcare professionals visited Congressional offices to discuss the need for increased funding for kidney disease research and innovation, as well as ask for support of a bill that would promote organ donation and protect the rights of living organ donors.

Alport syndrome Research Workshop
September 25-27
About 80 participants are expected at the University of Göttingen, Germany, later this month to attend a global research workshop to discuss strategies and agendas for Alport syndrome research. The workshop will bring together researchers, clinicians, and patient organizations, as well as biotech and pharmaceutical representatives from around the world. These international alliances for a rare disease such as Alport syndrome are critical to advancing better treatments for patients.

This is the third workshop ASF has helped organize. The first meeting was held in January 2014 in the UK and the second in Philadelphia, PA, in November 2014.

NORD Rare Diseases and Orphan Products Breakthrough Summit
October 21-22
More than 500 leaders from 80 organizations will take part in this summit to address the progress of rare disease diagnosis, research and drug development, and other issues to improve the treatment of rare diseases. The summit is hosted by the National Organization for Rare Disorders (NORD) and will be held in in Arlington, VA.

ASN Kidney Week and Regional Patient Meeting
November 3-8
Kidney Week is one of the world’s premier nephrology meetings, bringing together more than 13,000 kidney professionals from around the globe. Experts from around the globe come together to exchange knowledge, learn the latest scientific and medical advances, and listen to engaging and stimulating exchanges.  Kidney Week is hosted by ASN and will be held in San Diego, CA.

ASF has exhibited every year at Kidney Week and has found this meeting to provide invaluable opportunities for networking, outreach and awareness, and staying current on new research. ASF holds its annual Medical Advisory Committee meeting during Kidney Week and will also hold a regional patient meeting in San Diego on Saturday, November 7. More information on the location and time of the patient meeting will be made available soon.

Be sure to check back for more information on the results of these exciting conferences!

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