WELCOME TO ALPORT SYNDROME FOUNDATION
We are the leading patient-led, independent, non-profit organization in the United States educating and giving a voice to the Alport syndrome community. Our organization was established in 2007 by patients and families, and remains led by and dedicated to individuals living with Alport syndrome. Though our condition is rare, we have a supportive, engaged, and growing community.
Not every individual’s journey and experiences are the same, but we understand that receiving a diagnosis associated with a rare kidney disease can lead to a wide range of emotions: relief in having answers, perhaps being overwhelmed with new terminology and medications, anxiousness about your future and/or the future of your child/ren, and more.
Our mission is to improve the lives of people living with Alport syndrome through education, empowerment, advocacy, and direct investment in research. Our membership, events, educational resources, and programs are all free of charge. Click here for Free Membership with us.
We encourage you to join us and participate in the ways that work best for you. ASF offers one-to-one virtual meetings, small group virtual meetings to discuss topics of importance, a closed and private Facebook Support Group, tip sheets made with guidance from our Medical Advisory Committee, annual meetings, webinars, videos, volunteer opportunities, a monthly e-newsletter for members, and more.
Our Patient Resources
Our website translates into many different languages, and provides information about opportunities to:
- Advance your understanding of Alport syndrome
- Learn from medical experts
- Connect with other affected individuals and caregivers
- Participate in research
- Learn about clinical trials
- Advocate for your needs and the needs of our larger community
Here are a few of our educational resources to get you started on your Alport learning journey:
Investing in the Future
Alport Syndrome Foundation directs the majority of its resources to research and research-related activities.
Our Research Program has helped shape a well-connected landscape of researchers internationally through our Scientific Advisory Research Network, and has led to groundbreaking knowledge and clinical trials.
We also raise awareness and provide education for medical professionals and researchers through various avenues such as:
- Centralizing up-to-date research and information via our our website and app
- Sending regular email communications to those in our database
- Participating at medical and rare disease conferences
- Hosting educational webinars and in-person family meetings
- Maintaining a patient registry that has been created specific for our patient population
- Partnering with industry to support the development of potential clinical trials
Click “CC” to turn on closed captioning.
ASF Volunteer Research Program Chair and Board of Directors member, B. André Weinstock, PhD, MSAS, provides an overview of the current Alport syndrome Research Roadmap in this closed-captioned video.
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.
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.
Thanks to tireless volunteers and generous supporters, we have built an organization from the ground up. Together, as of Fall 2022, we have invested more than $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.
Co-Founder & Past President