Annual Campaign for
Working together to conquer Alport syndrome
|As a rare disease, Alport syndrome receives very little research funding. That's why patients and families conduct the Annual Campaign for Healthy Kidneys each fall to support the Alport Syndrome Research Program.|
Research studies have focused on correcting the genetic defect in cells derived from patients, basic science on structures of the kidney that affect the basement membrane, protein replacement therapy, microRNA therapy, and drug repurposing.
Together we are making a difference for the future of the Alport syndrome community by advancing research and empowering patients.
Join us in raising $175,000 this fall to accelerate progress to find better treatments and a cure.
This year the Alport Syndrome Foundation celebrates its 10th anniversary! Below are some accomplishments from the past ten years:
• Funding research to conquer Alport syndrome by providing more than $2 million in research with partners
• Encouraging investment into therapies to treat Alport syndrome, resulting in 2 existing clinical trials with more planned
• Connecting patients and families through an online support group, the Peer Support Network and regional Alport Family Meetings.
• Educating the medical community by providing online resources and attending medical conferences
• Encouraging collaboration in Alport syndrome research through the International Research Symposium
• Supporting collection of data through ASTOR to better understand how Alport syndrome impacts lives
• Empowering patients with information and resources through webinars, online resources, guides and brochures
• Advocating for the needs of patients with Alport syndrome on Capitol Hill
• Ensuring patients receive top-level care by distributing the Clinical Practice Recommendations to educate physicians and developing an accredited CME webinar for medical professionals that should be completed by year-end
• Making sure that the patient perspective is understood by researchers, industry and the FDA
Your financial support of the 2017 Annual Campaign for Healthy Kidneys will allow ASF to continue to fund cutting-edge research and provide support and hope to individuals and families living with Alport syndrome.