Scroll below to learn numerous ways to serve the Alport syndrome community of patients and families. We’ve sorted volunteer opportunities by topic (Research, Patient Support, Advocacy etc.) so you can quickly find something right for you! The bottom of this page features age-specific opportunities. All other opportunities are open to every member of the Alport community, unless stated otherwise.
Participate in Research
- Did you know there are numerous ways for Alport patients to help advance critical research? Click here to learn more!
Support Our Patient Community
- Join the thriving, ASF-moderated Facebook Support Group. Over 75 countries are represented in this group of 3,400+ individuals.
- In 2022, ASF established two patient subcommittees: Kidney Transplant Recipients and Parents of Pediatric Alport Patients. These patient cohorts will virtually convene throughout the year to identify gaps in care and suggest new resources and areas of support. If you would like to suggest ideas to these groups or if you have ideas for new subcommittees, email ASF
- Attend and/or provide topic ideas for Alport: Direct Connect Zoom meetings. Click here to learn more about these meetings and see a schedule of future events.
- Become a “Website Watcher.” Website Watchers will periodically review the Alport Syndrome Foundation’s website to check for errors or areas that could use additional information; we’re always looking to expand and provide new web content YOU need. If interested, email ASF Staff with the subject line “Website Watcher.” We’ll provide you with the tools you need to provide us with specific feedback.
- Multi-lingual? Artist? Photographer? Writer? Event planner? Organizer? Musician? Runner? If you’re thinking about how you can share your special skill(s) to support ASF’s efforts, contact us. Share your story/experience to help others through written form, video, or art.
Raise Alport Awareness
- Share information about ASF and Alport syndrome, such as Treatment Guidelines, our Patient Guide, and our free CME/CNE with your physicians.
- Purchase/wear ASF logo gear (more items coming Q1 2022).
- Share ASF’s social media and awareness posts with your own community. See the bottom of our website for links to all ASF social media channels.
- Write about your experience with Alport syndrome and share with your local newspapers/school papers/faith-based organization bulletin, and/or media outlets. ASF can help with story ideas, fast facts/talking points about Alport syndrome, and more.
Join Advocacy Efforts
Click here to learn about ongoing advocacy opportunities for Alport patients and families of all experience levels.
Support Fundraising Efforts
Opportunities for THOSE AGES 19-35
Provide your input! ASF Staff and Board of Directors would love guidance on issues of importance to patients and families in this age group. You can assist with advocacy efforts, ongoing programs and services, and future website content. Contact us to get involved!
Those ages 25-35 are encouraged to contact ASF’s Emerging Leadership Council to learn about their efforts and how YOU may be able to help.
Opportunities for TEENS
ASF is currently capturing important information about pediatric Alport patients as part of our Insight Campaign. Email ASF to learn how to connect with other Alport teens, share your patient journey, and help positively shape future care for fellow patients.
Create a 1-minute video telling us your first name (NO last names), city, if you know of others in your family with Alport syndrome, and what you like to do for fun! We’ll add your video to others on our website to help show teens living with Alport syndrome that they are not alone! Please submit only after receiving permission from parents/guardians. Send your video by email to [email protected].
Get connected to other teens with Alport syndrome, assist with advocacy efforts on policy issues important to Alport patient families, advise on updated content for our website and more. Interested? Contact us.