YOU ARE INVITED TO JOIN US!
Though Alport syndrome is rare, there is a community, and we invite you to join us. ASF has a group patient volunteers who we can pair you with for one-on-one sharing of information. It’s easy to connect with someone who is a good fit for you! Want to connect? Email ASF Staff.
CONSISTENCY IS KEY!
Taking medicines consistently, being followed by a nephrologist regularly, and lifestyle/diet choices are critical to slowing the progression of your disease and managing it. Learn more about treatment for young adults.
IN CRISIS MODE WITH NEW DIAGNOSIS – CONNECT!
Alport syndrome is often not diagnosed or misdiagnosed. It’s not uncommon for Young Adults ages 19-29 not to be aware of their disease until experiencing renal failure. If this is your situation, it’s helpful to connect with a patient ambassador that’s faced similar life circumstances. To connect to someone who has been in your shoes and is successfully on the other side of transplant, email us.
Get more information on dialysis options and modalities.
FEELING ISOLATED OR ANXIOUS – 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.
TAKING ACTION IS POWERFUL
ASF established an Emerging Leadership Council (ages 25-35) actively involved with advocacy efforts, advising the Board of Directors on issues of importance to this age group, working with the staff to continually update content for the ASF website, and more. To get involved with ASF, email us.