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 patient volunteers with whom we can pair you for one-to-one sharing of information. We can connect you with a patient/family 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 3,500 participating Alport patients/family members posting questions, ideas, information–and sharing their experiences. There is a lot of learning and support in action. Additionally, in April 2022, we created a new page of resources just for parents and caregivers of pediatric patients.
INTERACT WITH OTHER PATIENTS AND FAMILIES!
ASF organizes an annual 2-day Alport Connect 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!
As of March 2021, there are two recruiting human clinical trials specifically for Alport patients in the United States and Reata Pharmaceuticals announced on March 1, 2021 that they’ve submitted a New Drug Application for bardoloxone methyl. By registering as a free member of ASF, you will receive updates and information related to research and clinical trials.