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 peer support group network of trained patient ambassadors with whom we can pair you for one-on-one sharing of information. It’s easy to request to connect with a patient ambassador that’s a good fit for you.
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.
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 is building a Young Professionals Group (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, email us.