YOU ARE INVITED TO JOIN US!
Though Alport syndrome is rare, there is a thriving community, and we invite you to join us. ASF has a network of trained patient ambassadors with whom we can pair you for one-to-one sharing of information. We can connect you with an ambassador who has faced similar life experiences.to remind you that you are not alone!
IF YOU FEEL ANXIOUS OR ISOLATED – WE’VE GOT YOU
ASF facilitates a monitored Facebook Support Group page with almost 2,000 participating Alport patients/family members posting questions, ideas, information–and sharing their experiences. There is a lot of learning and support in action.
YOU CAN MEET OTHER PATIENTS IN PERSON
ASF organizes an annual 2-day Alport Connect Together family meeting that includes time for learning from experts, connecting with other patients, social time, and separate programming designed specifically for teens and for children to learn about Alport syndrome in age appropriate and empowering ways.
YOUR CHILD/TEEN CAN CONNECT TO OTHERS
Reach out to us, and we can connect you and/or your teen to another family/teen who can share their thoughts and experiences for support and guidance.
THERE IS REASON TO BE HOPEFUL!
Currently the first human clinical trial to investigate a new treatment for Alport syndrome is in progress. Positive results from the first year of the two-year study became available in November 2019. There are also other investigational studies in the pipeline. By registering as a free member of ASF, you will receive updates and information realted to research and clinical trials.