APDS Advocacy Coalition

12/13/2024

This podcast from Once Upon A Gene is a verbal hug for caregivers this holiday season. Where ever you listen to your podcast. .
https://open.spotify.com/episode/5eMMoALM7HNWwuRGHbJEcc?si=3994ba7c9419491e

Once Upon A Gene · Episode

11/01/2024

We are so excited to launch this new project. We want to empower our children to tell their story, be seen, be heard, and be understood. These books will be designed for children be able to share with classmates, friends, or anyone that just wants to know more.

We look forward to hearing from you!

11/01/2024

Thank you to everyone that came and listened on Wednesday. I hope the information was helpful. 😀 I look forward to hearing from you about things you'd like me to talk about next month!

Send a message to learn more

10/10/2024

You are not alone

10/02/2024

On behalf of the APDS Advocacy Coalition, we extend our deepest gratitude to Governor Gretchen Whitmer of Michigan and Governor Tony Evers of Wisconsin for officially proclaiming October 01 as APDS Awareness Day yesterday! Your leadership helps shine a light on Activated PI3K Delta Syndrome (APDS), bringing hope to those living with this ultra rare immune disorder and their families.

This is a tremendous step toward raising awareness and empowering the APDS community. Your recognition amplifies the voices of those affected and brings us closer to better care, research, and support.

If you are a family or individual from another state interested in applying for an APDS Awareness Day proclamation, we are here to help! Reach out to us for support, guidance, and resources to make it happen in your state.

Together, we can continue to drive change, increase understanding, and support each other in this journey!

Contact the APDS Advocacy Coalition:
Email: [email protected]
Phone: 707-780-7545
Websites: https://linkedin.com/company/apds-advocacy-coalition/

APDS Advocacy Coalition | 74 followers on LinkedIn. Through Empowerment Not Chance | We are a non profit organization focused on supporting the community of an ultra rare disease known as APDS.

06/17/2024

I'm in the Republic of Ireland this week, if anyone would like to meet for coffee and talk. I have met several U.S. patients and families either in person or zoom and zoomed with New Zealand, I'd love to hear from any others here while I'm visiting. This organization is here for you, I'm here for you! ~Laura

05/20/2024

A recent study by the NIH on the impact to caregivers of APDS patients. This highlights one of the primary reasons this 501c3 non profit was formed. If you or someone you know is caring for someone with APDS please follow this page, and message us. You don't have to do it alone. We are here to help!

APDS has a high disease burden and there is an unmet need for licensed, more targeted treatments which modify disease progression. This study was the first to describe the day-to-day experience and HRQoL impact of APDS from the perspective of individuals living with the condition, caregivers and tre...

10/13/2023

Hi! You have reached the APDS Advocacy Coalition. APDS is a rare genetic Immune Deficiency. Current estimations are that there are 1-2 people in every million affected. We are a grass roots non profit working to provide support and resources for those that are affected by APDS as well as their loved ones. We appreciate the opportunity to educate and work with the general public about this condition and ways they can help. Please check back soon as we are working hard to get everything up and running. ~Twana & Laura