One of the best ways to begin advocating is to understand the importance of self-advocacy. By learning the basics of current Alport syndrome information, you’ll be best prepared to educate other patients, your caretaker and physicians, and lawmakers. It’s also vital to help dispel the spread of misinformation within and beyond the Alport community. Lastly, remember to share Alport syndrome treatment guidelines with your physicians.
Many individuals affected by a rare disease such as Alport syndrome want to help but aren’t sure where to start. Advocacy can seem intimidating, especially to newly-diagnosed patients, but it’s critical to remember to start where you feel most comfortable and gain experience by meeting others who share the goal of spreading Alport Awareness. It’s important to note in-person advocacy events include training so you’re never left unprepared!
“You do not have to go to Washington, DC, to advocate. All you have to do is tell your story and make your voice heard. Tell others what it is like to live with Alport syndrome and what we want to see for the future. We do not want another generation of our families to experience kidney failure and hearing loss. To effect change we must speak up – each in our own way.”
Sharon Lagas, Alport Syndrome Foundation Co-Founder and former President
Current ASF advocacy topics include, but are not limited to:
- Early Alport syndrome diagnosis and treatment
- Expanding Alport syndrome research
- The critical importance of organ donation
- Transplantee Medication Assistance, particularly H.R. 5534 Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019
- Living organ donor rights, particularly H.R. 1224, The Living Donor Protection Act
- The burden of immunosuppressant costs/coverage
- Hearing aid costs/coverage.
If you are interested in advocating with ASF, please contact us.
The following is an overview of ways you can advocate with ASF and our partner organizations in the weeks and months to come:
No Limits to Advocacy
It’s important to remember advocacy isn’t limited to a select few dates annually. Opportunities to help at the local and state levels and accompanying advocacy tools can always be found on the Rare Disease Legislative Advocates’ website, National Kidney Foundation’s Advocacy website, and at EveryLife Foundation. Be sure to follow ASF social media for upcoming advocacy opportunities as well.
Interested in participating in an advocacy event or have an event suggestion? Do you know a policymaker or legislator looking to raise Alport Awareness? Email [email protected] with the subject line “Advocacy.”