California Rare Action Network

11/05/2025

✨ When science meets story, policy meets passion — that's where real change begins.

Our panel brings together researchers, advocates, and those living the rare disease journey every single day. Because the most powerful conversations happen when we honor both the data and the lived experience behind it.

Join us for the Empowering Caregiver Brunch — November 8 in Livermore, CA. Free, restorative, and built for connection.

RSVP: https://www.surveymonkey.com/r/PNGDSQT Open to patients, caregivers, and families

10/29/2025

📣 Calling all Rare Disease Caregivers! 💕

You do so much for others — it’s time for a morning just for YOU. 🥂
Our Caregiver Brunch is only 10 days away, and we can’t wait to celebrate your heart, your strength, and your stories.

Join us for food, laughter, and connection — you deserve this time to breathe and be appreciated!

✨ RSVP now to save your spot! ✨
Scan the QR code to RSVP

10/09/2025

📣Calling all rare disease caregivers! You're invited to our special Rare Caregivers Brunch on November 8th. As someone navigating the unique challenges of caring for a loved one with a rare disease, this event is created just for YOU.⁠⁠**

**Connect with others who truly understand your journey, discover helpful resources, and find the community support you deserve. Join us for a morning of connection, learning, and recognition of your incredible dedication.⁠⁠**

🗓️Mark your calendar for Saturday, November 8, 2025.
Save your spot by RSVP by visiting the following link below ⬇️

https://www.surveymonkey.com/r/PNGDSQT

⁠⁠**

08/16/2025

Thank you all who have registered! We look forward in seeing you tomorrow!

For those still thinking about it, there is still time to join us!

📢 Join us for the California Rare Action Network Picnic! 🧺

Connect with fellow rare disease community members at our inaugural gathering on Saturday, August 16th at May Nissen Park in Livermore from 10am-1pm!

Whether you're living with a rare disease, a caregiver, or an ally, this bring-your-own picnic is all about building relationships and strengthening our northern California rare disease community.

Don't forget to bring food, drinks, and a blanket/chair!

RSVP here: https://www.surveymonkey.com/r/YKTHK79

08/09/2025

📢 Join us for the California Rare Action Network Picnic! 🧺

Connect with fellow rare disease community members at our inaugural gathering on Saturday, August 16th at May Nissen Park in Livermore from 10am-1pm!

Whether you're living with a rare disease, a caregiver, or an ally, this bring-your-own picnic is all about building relationships and strengthening our northern California rare disease community.

Don't forget to bring food, drinks, and a blanket/chair!

RSVP here: https://www.surveymonkey.com/r/YKTHK79

04/09/2025

Adrenal Insufficiency United is hosting an educational event in Los Angeles at Saturday, May 3! Registration info is below.

After a successful event in Portland, OR this week AIU now is full steam ahead looking towards LA. We are very excited about our agenda there and know all who attend will benefit greatly from our slate of speakers!!

Early bird pricing ends April 1st so only a couple more days to take advantage of that savings.



https://aiunited.org/aiu_events/

11/15/2024

🔔 Join NORD on November 20, 2024, for a listening session at the Los Angeles Central Library. This event is for Latino patients with rare diseases and their caregivers.:

These istening sessions are informal community events where rare disease patients and families have the opportunity to connect with each other and share their experiences with NORD!

Support with local travel assistance (Uber/parking costs) will be provided and all participants will receive a Visa gift card as a thank you for their time!

***Registration is required***

NORD is hosting community listening sessions for Latino/Latina/Latinx rare disease patients, families, and caregivers in southern California. Join us on November 20! Learn more and register here: bit.ly/3AHKDUT

This private, confidential event will be held in both English and Spanish. Registration is required. Travel reimbursement is available and participants will receive a gift card. There will also be games and activities for kids, and dinner will be served!