Help Direct Alport syndrome Research

Help Direct Alport syndrome Research

Over the past nine years, ASF has successfully created a landscape that encourages industry, academia and the government to invest in studying Alport syndrome. The result can be seen in the increased number of potential therapies “in the pipeline” to treat Alport syndrome.

Now that we have increased the interest and investment, it is important for us as a patient advocacy organization to define what specifically we want the research to accomplish.

Beyond the obvious answer of wanting a cure, and even beyond wanting treatments to prevent or end the need for dialysis and transplant, what clinical and quality of life objectives would be the most impactful to patients?

ASF is seeking to answer this in a meaningful way and incorporate these answers into our research funding. We will also share this information with all researchers of Alport syndrome in the academic, government and industry communities.

The first step to finding these answers is to hear from the patient community. Please take a moment to complete this survey. ASF is assembling a panel of patients and researchers who will analyze the results and help determine ASF’s research goals.

The other way you can make a significant contribution to these efforts is to donate to or join the Annual Campaign for Healthy Kidneys. The more funding we have, the more research we can fund to advance these goals and the more we can enhance the landscape to encourage researchers to invest time and resources in them. Our goal is to raise $150,000 this year to keep the research momentum going, but we need “all hands on deck” to do so.

  1. Become a campaigner and fundraise, either by setting up an online page or requesting materials to conduct an offline fundraising campaign.
  2. Make a personal donation to the help fund Alport syndrome research.

Your involvement is critical in helping ASF reach it’s $150,000 goal. Take action today by donating and spreading the word. Together, we can conquer Alport syndrome!


** This was originally shared via email.

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