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ABOUT THE ALPORT SYNDROME FOUNDATION

We are the leading independent non-profit organization in the United States educating and giving a voice to the Alport syndrome community.

Our mission is to improve the lives of those affected by Alport syndrome through education, empowerment, advocacy and research. Our Vision is to conquer Alport syndrome.

Alport Syndrome Foundation directs the majority of its resources to our competitive Research Award Program and research-related activities. We also raise awareness and provide educational resources for patients, medical professionals and researchers through our website, regular email communication with patients, social media presence, and participation at medical and rare disease conferences.

EMPOWERING ALPORT SYNDROME STAKEHOLDERS

We empower Alport syndrome stakeholders by:

  • investing in research
  • hosting patient and family meetings
  • providing a network of support
  • maintaining the world’s largest database of Alport patients and families
  • communicating regularly with patients
  • centralizing up to date research and information
  • supporting the patient registry in the United States (ASTOR)
  • working with industry to support the development of potential clinical trials.

ASF is a 501 (c)(3) organization. Our non-profit identification (EIN) # is: 20-8237159. All contributions are tax deductible to the extent allowed by law.

who-we-are

A LETTER FROM OUR Co-FOUNDER

I am Co-Founder and Past President of the Alport Syndrome Foundation. This organization was a dream of mine since 2004 when I lost my brother at the age of 38 to the effects of this disease and more of my family members were diagnosed. We learned that my mother, myself, my two sons, and my brother and his two daughters were affected. I wanted to connect with others dealing with the same issues for support and resources, but there was nothing available at the time.

– Give a voice to the Alport syndrome Community.
– Form a support network. – Advance research.
– Support the patient registry.
– Sponsor patient and academic meetings and collaborate internationally.

Thanks to tireless volunteers and generous supporters, we have built an organization from the ground up. Together, we have raised and invested close to $2 million in research, and helped thousands of patients and families lead better lives.

Yet Alport syndrome remains a rare disease that gets relatively little attention and funding. Awareness in the medical and patient community needs to be further strengthened. Research conducted over the last several years gives hope that we may be moving closer to understanding effective pathways for drug therapies, the first human clinical trial is in progress, and there are other potential drug therapies in the pipeline.

This forward momentum must be sustained. ASF continues to build awareness and interest in the medical and patient communities, and to dramatically increase the amount of resources applied to making Alport syndrome a treatable disease.

Your support can help make this happen. I challenge others in the Alport community to get involved. There is only one requirement – your desire to make a difference in the lives of patients and families dealing with Alport syndrome. I look forward to the day that all of our children will not have to worry about the effects of this disease. I am committed to accomplishing this through the Foundation. I hope you will join us.

Sharon-Lagas

Sharon-Lagas

SHARON LAGAS

Co-Founder & Past President

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