Cystic Fibrosis Research Institute

Cystic Fibrosis Research Institute CFRI is a 501(c)(3) nonprofit organization that funds innovative cystic fibrosis (CF) research.

CFRI’s social media pages exist to support, educate, inform, connect, and celebrate our diverse cystic fibrosis community. CFRI’s social media pages are moderated channels, meaning all comments posted on these pages will be reviewed for appropriate content. Comments that include hate speech, abusive or vulgar language, personal attacks, spam, advertisements, endorsements of products, or which are

off-topic, will be removed, and if necessary, reported to the appropriate social media platform. CFRI reserves the right to determine which comments are acceptable for its social media pages. CFRI will, however, post and attempt to comment on legitimate questions and concerns regarding our mission, programs and services for the national – and international – cystic fibrosis community.

CFRI’S Siri Vaeth Honored with Inaugural rare Disease Patient Advocacy Champion Award! 👏🏽At the California Rare Disease ...
06/14/2026

CFRI’S Siri Vaeth Honored with Inaugural rare Disease Patient Advocacy Champion Award! 👏🏽

At the California Rare Disease Access Coalition’s first annual Rare Champions Reception CFRI’s Siri Vaeth received the inaugural Rare Disease Patient Advocacy Champion Award. Assm. Rick Chavez Zbur, who has sponsored key legislation in support of the rare disease community, was honored with the 2026 Legislative Rare Disease Champion Award.

Pictured left to right - Assm Gonzales, Assm Zbur, Siri Vaeth, and Lynne Kinst, Executive Director of the Bleeding Disorders Council of California and head of the CA Rare Disease Access Coalition.

06/14/2026

📣 Take Action and Help Protect Those Waiting for Lung Transplants!

On May 7, the national scoring system used to determine who receives donated lungs changed. The change threatens to increase the number of people who do not survive the wait for transplant and could make matching even more difficult for people who are very short, have type O blood, high antibodies, or who live on the West coast.

Luckily, an opportunity to give feedback on this change between now and July 3rd has just opened.

👀 Watch this video to learn how to take action: https://www.youtube.com/watch?v=zXsFAhwZ8i0
➡️ Visit: www.lungtransplantfoundation.org/act.

Bad Sleep + CF = A Brutal Combo. Learn How Mindfulness Can Change That - Last chance to sign up for CFRI's workshop: Can...
06/09/2026

Bad Sleep + CF = A Brutal Combo. Learn How Mindfulness Can Change That - Last chance to sign up for CFRI's workshop: Can mindfulness help you sleep?

Julie Desch, MD, mindfulness coach and person with CF, will explore the connection between narrative thinking and sleep. You'll discover how to work with the storytelling mind that keeps you awake rather than fighting it, and gain practical mindfulness tools.

🗓️ Tuesday, June 9, at 5:00 pm PT (8:00 pm ET),

Participate in a gentle qigong sequence, and guided meditation designed to ease the transition from wakefulness into rest.

👉🏼 Register Today: https://us02web.zoom.us/meeting/register/_qcTW8a1Q2KEWtVC1eU1dA #/registration

Made possible with support from Vertex Pharmaceuticals, Viatris, Genentech, the Boomer Esiason Foundation, individual donors and bequests.

🚨 URGENT: California's proposed Medi-Cal asset limit would devastate people with cystic fibrosis — and tens of thousands...
06/09/2026

🚨 URGENT: California's proposed Medi-Cal asset limit would devastate people with cystic fibrosis — and tens of thousands more.

Governor Newsom's proposed budget would cut the Medi-Cal asset limit from $130,000 down to just $2,000 for an individual. That means savings, cash, investments, and even a second vehicle all count toward this cap.

More than 25% of the ~2,500 Californians living with CF depend on Medi-Cal for their health coverage. If this passes, a projected 62,000 seniors and people with disabilities could lose coverage within the first two years.

To put this in perspective: average rent in California already exceeds the proposed limit. This policy wouldn't just threaten health care — it would push vulnerable people into poverty.

The Senate rejected this proposal. The Assembly passed it. Now it's up to all of us to make sure our legislators know exactly what's at stake.

👉 Sign the action alert and urge your Assemblymember and Senator to REJECT this harmful proposal: https://ujoin.co/campaigns/4504/actions/public?action_id=6969

Share this post — the CF community needs your voice. 💙

06/04/2026

📣 Attention CF clinicians, trainees, and researchers — we have good news.

We've extended the application deadline for the Patrick Nash Fellows Training Program to June 15th. Named in honor of Patrick Nash, an adult with CF who was passionate about improving care for the growing adult CF population, this program is about building the next generation of leaders in adult CF care.

Selected fellows will receive:
🔹 Fully funded travel, accommodations & meals for a 3-day symposium in Dallas, TX (Nov 12–14, 2026)
🔹 Expert mentorship from faculty at leading CF centers nationwide
🔹 Quarterly virtual meetings and ongoing connection with a growing fellows network

If letters of recommendation are holding you back — don't let them. You can submit your application first and have your letters follow.

Please share this with anyone in your network who cares deeply about the future of adult CF care. The right people are out there — help us find them.

➡️ Apply Today: https://www.cfri.org/research/fellows-training-program/

Happy Pride Month! 🌈💜The CF community is beautifully diverse — and that includes our incredible LGBTQ+ patients, caregiv...
06/03/2026

Happy Pride Month! 🌈💜

The CF community is beautifully diverse — and that includes our incredible LGBTQ+ patients, caregivers, families, and advocates. Pride Month is a reminder that the fight for health, dignity, and belonging is never separate from the fight for equality.

At CFRI we believe that every person with CF deserves access to compassionate, affirming, and equitable care — full stop. No exceptions. No asterisks.

To our LGBTQ+ CF community — you are seen, you are celebrated, and you belong here. This month and every month. 💜🌈

CFRI WORKSHOP: Alternative & Complementary Therapies in CF Care - Addressing Stigma & Improving Relationships. 🗓️ Thursd...
06/03/2026

CFRI WORKSHOP: Alternative & Complementary Therapies in CF Care - Addressing Stigma & Improving Relationships.

🗓️ Thursday, June 11 @ 12pm PT

Join us for the second workshop in CFRI's Faces of CF 2026 Diversity series. We will discuss the ways that a patient's cultural background influences their preferences and relationship to care provided in the US.

Open to people with CF, their families & medical professionals.

➡️ Register Today: https://us02web.zoom.us/meeting/register/vTkvkDDWRnC4RhVCC_yEGw #/registration

Made possible with support from Vertex Pharmaceuticals, Genentech & Viatris.

☀️ Longer days, familiar faces. Summer brings change, but support stays steady. CFRI’s online Support Groups meet monthl...
06/01/2026

☀️ Longer days, familiar faces. Summer brings change, but support stays steady. CFRI’s online Support Groups meet monthly and welcome participants from around the world. Connection that fits into your life, wherever you are.

👉🏽 Register: https://www.cfri.org/education-support/psychosocial-support-programs/

CFRI support groups are made possible in 2026 to date by Viatris, Genentech, individual donors and bequests.

Address

1731 Embarcadero Road, Suite 210
Palo Alto, CA
94303

Opening Hours

Monday 9am - 6pm
Tuesday 9am - 6pm
Wednesday 9am - 6pm
Thursday 9am - 6pm
Friday 9am - 6pm

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