Podcast
Podcast
Facebook
Youtube
Linkedind
Twitter
Instagram
Flickr
ASF Merch

FREE MEMBERSHIP DONATE NOW VOLUNTEER

Podcast
Podcast
Facebook
Youtube
Linkedin
Twitter
Instagram
Flickr

ASF Merch

Select Language

Generic filters

Exact matches only

Language

FREE MEMBERSHIP DONATE NOW VOLUNTEER

Select Page

About ASF
About Alport Syndrome
Patients
Medical Professionals
Research & Pharma

Generic filters

Exact matches only

Tag: advocacy

ASF President, Sharon Lagas, on the Importance of Advocacy

ASF President, Sharon Lagas, on the Importance of Advocacy

17 March, 2016 / No Comments

South Dakota parent lobbies for state hearing aid assistance

South Dakota parent lobbies for state hearing aid assistance

02 October, 2015 / No Comments

Generic filters

Exact matches only

Recent Posts

March 2025 Newsletter
February 2025 Newsletter
ALPORT CONNECT 2025 MEETING
April Direct Connect
January 2025 Newsletter

Categories

Advocacy
Annoucement
Clinical Trial
Diagnosis and Treatment
Dialysis and Transplant
Featured Homepage
Fundraising
Genetics
Hearing Loss
Mental Health
Monthly Newsletter
Nutrition
Patient Engagement
Patient Story
Uncategorized
Vision Problems

ASF is pleased to announce the addition of four ne

ASF is pleased to announce the addition of four new members to the Emerging Leadership Council (ELC); Ben Rosengart, Brett Raisman, Mack Bonebrake, and Rachel Denham.

All of these members have been significantly impacted by #Alportsyndrome and seek to use their unique skillsets to serve the community. As part of the ELC, they will help create patient resources, promote advocacy and awareness, support others in the community, and more!

The ELC was established in 2020 to ensure the voice of those in the 20-30 age range is well-represented in the foundation’s decision-making.

Patients in their 20s and 30s are encouraged to contact the ELC to share their stories, learn about relevant ASF resources, and become further engaged within the Alport community. To contact the ELC, please email info@alportsyndrome.org!

Way to go, Dan! Congrats for running the Marine Co

Way to go, Dan! Congrats for running the Marine Corps Marathon and raising $50,000 for Alport Syndrome Foundation! Together with other families like yours, we’re working to change the stories and outcomes for individuals living with Alport syndrome. We appreciate your dedication. For more information about our rare kidney disease and our Annual Campaign, visit our website (link in bio)!

The Paul Silver Enrichment Award cycle ends Octobe

The Paul Silver Enrichment Award cycle ends October 25th! Don’t forget to apply! Swipe to see the 2023 Award Recipients!

Learn more about the 2024 Paul Silver Enrichment A

Learn more about the 2024 Paul Silver Enrichment Award, open to U.S. Alport patients ages 18-24, at the link in our bio! Applications are due October 25th.

”Hi, everyone, my name is Rachel. And I am a recipient of the 2023 Paul Silver Enrichment Award, and I was 23 years old when I applied. I applied because I was also in the midst at the time of applying to graduate programs in genetic counseling, and I knew that this would be a great resource for me to have as I knew I’d have upcoming tuition payments once I started a graduate program. So that’s what I’ve done with the funds so far, and it has been great for me to use those to pay for the first semester’s tuition so that I can focus more so on what I need to be figuring out before I start school and all the studying I need to be doing, that I can focus more on those types of things.”

Load More Follow on Instagram

Tags

advocacy alport syndrome 101 alport syndrome females alport syndrome males announcements ASF News blog clinical study clinical trial dialysis diet event events eyes family stories genetics hearing loss history hope Kidneys living with alport syndrome patient perspectives patient perw patient registry research self-advocacy transplant

Join the ASF Alport Patient Registry to Support Research.

An organization led by and dedicated to the
Alport Community of Patients & Families.
[email protected]
+ 1 (480) 800-3510
Mailing Address: Alport Syndrome Foundation
P.O. Box 4130
Scottsdale, AZ 85261-4130

Learn

About Alport Syndrome
Top 5 Things to Know Right Now
Our Foundation
ASF Research Program
Clinical Trials

Engage

Patient Registry
NEPTUNE (Natural History Study)
Volunteer Opportunities
Direct Connect Meetings
Facebook Support Group
Advocacy

Donate

Donate Now
Gifts Honoring Our Community
Fundraising
Corporate Partners

Newspaper
Podcast
Facebook
Youtube
Linkedin
Twitter
Instagram
Flickr

© 2025 Alport Syndrome Foundation Registered 501(c)(3). EIN: 20-8237159 News Sitemap Privacy Policy Disclaimer © 2025 Alport Syndrome Foundation

Generic filters

Exact matches only

About ASF
About Alport Syndrome
Patients
Medical Professionals
Research & Pharma
ASF Merch

Podcast
Podcast
Facebook
Youtube
Linkedind
Twitter
Instagram
Flickr
ASF Merch

FREE MEMBERSHIP DONATE NOW VOLUNTEER

Podcast
Podcast
Facebook
Youtube
Linkedin
Twitter
Instagram
Flickr

ASF Merch

Select Language

X