The Alport syndrome Foundation is a non-profit organization founded in 2007 by a group of families affected by the disease and guided by a Medical Advisory Committee of renowned Nephrologists. The Foundation was built on the past efforts of the late Dr. Curtis Atkin (who himself had Alport syndrome) of the University of Utah and the Hereditary Nephritis Foundation. ASF is the leading independent non-profit organization in the United States serving and giving a voice to the Alport syndrome community.
The ASF MISSION is to improve the lives of those affected by Alport syndrome through education, empowerment, advocacy, and research.
The ASF VISION is to conquer Alport syndrome.
ASF is focused on realizing this Vision, and has directed the majority of the Foundation’s resources to medical research. ASF raises awareness in the patient and medical community and is fostering collaboration among Alport syndrome stakeholders all over the world – including alliances with international patient support groups, patient registries, and medical researchers. ASF empowers the Alport syndrome community by centralizing medical information, hosting patient meetings and conferences, and providing education, advocacy, communication and a network of support.
ASF‘s current and on-going programs and activities include:
Competitive Research Funding Program
The ASF research program is funded by the Annual Campaign for Healthy Kidneys, which has allowed ASF to develop strategic alliances and international partnerships to increase the resources applied to finding novel treatments and a cure. Since 2010, ASF and its partners have funded 11 projects on Alport syndrome that have focused on correcting the genetic defect in cells derived from patients, basic science on the structures of the kidney that affect the basement membrane and disease progression, protein replacement therapy, microRNA therapy, antibody therapy, and drug repurposing.
Alport syndrome Treatments and Outcomes Registry (ASTOR)
ASF provides funding and support for patient registry (ASTOR) based at the University of Minnesota. In addition, ASF helps recruit patients and family members to join the registry through education on the significance of a registry for clinical studies for a rare disease such as Alport syndrome.
ASF sponsors meetings and conferences to educate those affected by Alport syndrome. ASF has connected more than 7,000 patients, families, physicians, and researchers in at least 75 countries.
Teen/ Young Adult Support Program
ASF provides specialized support to this age group, particularly hard hit by this disease, including special programs at family conferences, a dedicated Facebook page called Alport Avengers, and sponsoring the Paul Silver Tribute Award.
Medical Conferences and Research Workshops
ASF raises awareness of current clinical guidelines, helps promote emerging research and current clinical trials at medical conferences, as well as sponsors medical and scientific symposiums at events such as the American Society of Nephrology Kidney Week, one of the largest renal meetings in the world, and the International Pediatric Nephrology Association Congress.
In January 2014, ASF participated in and supported a global research workshop in the UK. ASF sponsored a follow-up meeting in Philadelphia, PA, in November 2014 and attended the research workshop at the University of Göttingen, Germany, in September 2015. These workshops bring together Alport syndrome researchers, clinicians, and patient organizations as well as biotech and pharmaceutical representatives.
International Alport syndrome Organizations
ASF is forming strategic alliances and coordinating resources with Alport syndrome advocacy organizations around the world. The international research workshops noted above are one way patient representatives collaborate.
Online Information and Resources
ASF‘s website ensures that clear and accurate information about Alport syndrome is readily available. Resources include educational materials and videos from patient and medical conferences.
Social Media, Blog and Monthly e-Newsletter
ASF actively uses Facebook, Twitter, Instagram and YouTube and disseminates a monthly e-newsletter to provide the latest Alport syndrome developments and ongoing communication and support. In addition, a blog was recently launched to help educate and support patients and families.