CHM Overview: Choroideremia (CHM) is an ultra-rare inherited retinal disease. It is X-linked, primarily affecting males, and causes progressive vision loss, often starting with night blindness and narrowing of the visual field.

Who Is Affected? An estimated 1 in 50,000–100,000 males worldwide are diagnosed with CHM. While the condition is rare, the impact on families and communities is profound. “Ultra-rare” describes the diagnosis, not the lives it touches.

Why Awareness Matters: Awareness drives research, connects families, and strengthens the CHM community. The Choroideremia Research Foundation (CRF) works every day to support patients, fund studies, and raise visibility for CHM.

How You Can Help: Share posts and stories. Listen to patient voices. Support research and advocacy. Attend CRF events. Donate to advance sight-saving research. Every action helps the CHM community. Donate today: curechm.org

SHARE this post to help educate your family, friends, and community about Choroideremia (CHM) and why awareness matters! Make a difference this Rare Disease Day: secure.qgiv.com/for/choroide...

#Choroideremia #CureCHM #RareDiseaseAwareness

Alt text: Graphic with the headline “Did You Know?” stating that over 300 million people live with rare diseases and only 0.025%–0.05% have choroideremia (CHM), followed by the message “Even the rarest voices deserve to be heard.” Includes the Rare Disease Day logo, the date February 28, and a globe outline.

Today is Rare Disease Day! 🌍 Over 300M people live with a rare disease. CHM affects just 1 in 50K–100K. Support the ultra-rare CHM community & fund sight-saving research: secure.qgiv.com/for/choroide...

#RareDiseaseDay #CureCHM #SightSavingResearch

2026 Rare Disease Week on Capitol Hill 🏦
#CureCHM #RareDiseaseCommunity #RareDC2026

Countdown to Rare Disease Day graphic featuring a February 2026 calendar with February 28 circled and arrows pointing to the date. Text reads, “Raise your voice for choroideremia (CHM)” alongside the Rare Disease Day logo.

Rare Disease Day is February 28! Help shine a light on choroideremia (CHM). On Saturday, share a post and tag @curechm to grow awareness and support sight-saving research. Make a difference today:
secure.qgiv.com/for/choroide...

#RareDiseaseDay #RareDiseaseAwareness #Choroideremia #CureCHM

Collage of three photos: a group photo of Joanna, Matt, and Michelle after the race; a mid-race photo of Joanna giving a thumbs-up; and a photo of her running in a blue Team CHM shirt.

Joanna, Matt, & Michelle took on the Alicante Marathon in Spain, & Joanna proudly sported her Team CHM shirt on race day! While this wasn’t a fundraiser, every moment of visibility helps raise awareness for choroideremia (CHM).

#teamchm #curechm #marathon #Alicante #choroideremia

#GivingTuesday2025 GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. Give to the Choroideremia Research Foundation this GivingTu...

Tomorrow is GivingTuesday!

Your gift to CRF will be doubled up to $25K thanks to two generous donors.

Twice the impact. Twice the hope. Let’s do this.
curechm.salsalabs.org/givingtuesda...

#GivingTuesday #curechm #choroideremia

Picture collage of Team CHM runners at the 50th Marine Corps Marathon and TCS NYC Marathon.

Team CHM crushed the 2025 Marine Corps & NYC Marathons! Every mile raised awareness & support for CHM research—your dedication inspires us all. #TeamCHM #CureCHM

An image of a crosswalk with Cory MacDonald posing with his white cane. Text that says October 15, 2025 White Cane Safety Day. Celebrating independence, awareness, and mobility for people who are blind or visually impaired.

October 15th marks White Cane Safety Day—celebrating independence, mobility, and confidence for people with vision loss.

#WhiteCaneSafetyDay #Accessibility #CureCHM #VisionLossAwareness #Choroideremia

Group of 30 people who attended the fundraiser to work out at Good Movement Studio in Park City, Utah. The group is standing outside with mountains in the background.

Michelle, Damon, and Brixton Holbrook posing together by the juice and coffee station.

Huge thanks to Michelle Holbrook & family for their CHM FUNdraiser #6! Amazing turnout, energy, & generosity supporting the CHM community. #CureCHM

Choroideremia Research Foundation Logo. Text: October is World Blindness Awareness Month Icons: Guide Dog, Eye, Blindness Awareness White Ribbon, White Cane

October is World Blindness Awareness Month! At the CRF, we are committed to helping those affected by choroideremia (CHM) through research, patient support, and community initiatives.

Support our mission: curechm.salsalabs.org/donate

#WorldBlindnessAwarenessMonth #CureCHM

Group photo of participants in Team CHM gear at the Mesa Sprint Tri

Group of people holding curechm.org towels by the pool at the Mesa Sprint Tri

Huge thanks to Jess Thompson and his cardiac practice for sponsoring the Mesa Sprint Tri and sharing these great shots! Grateful for your support and for helping spread CHM awareness.

#TeamCHM #MesaSprintTri #CureCHM

Nutrition, Diet & Exercise for CHM Health with Dr. Katie Bales
youtu.be/AyYkzWy8J-8?...
#CureCHM #Choroideremia #RareDiseaseCommunity

CRF Research Spotlight: CHM Updates with Ben Shaberman
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#CureCHM #Choroideremia #RareDisease #SavingSight

Optogenetics with Dr. Eric Daniels, Kiora Pharmaceuticals

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#CureCHM #Choroideremia #RareDisease #SavingSight #RetinaResearch

Optogenetics with Dr. Raj Agrawal, Ray Therapeutics

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#CureCHM #Choroideremia #RareDisease #SavingSight #RetinaResearch

CHM 101 with Dr. Ian MacDonald
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#CureCHM #Choroideremia #RareDisease #SavingSight #RetinaResearch #Ophthalmology

A graphic of text that says 'SINCE 2000: CRF'S MILESTONES AT A GLANCE with a chart that states: $6M In Research Funding 100+ Research Grants 140 Research Network Members 25 Years of Community & Support 4,375+ CHM Family Members 7,375+ Social Media Followers 60 Countries Connected #1 CHM Organization Worldwide'

Since 2000, CRF has grown worldwide: 25 years of support, $6M+ in research, 60 countries connected, 4,375+ CHM families, and being the #1 CHM org.

Join us and help fuel research and community growth!

Become a member today: curechm.org/for-patients...

#CureCHM #25Years #Choroideremia

Choroideremia Research Foundation Launches Membership Drive Amid 25 Years of Progress and Community Join CRF’s 2025 Membership Drive and be part of 25 years of connection, progress, and purpose. Support CHM research and the global CHM community.

Choroideremia Research Foundation Launches Membership Drive Amid 25 Years of Progress and Community

Read the Full Press Release:
www.einpresswire.com/article/8333...

#CureCHM #MembershipDrive #25Years #CRF

At the 2025 CRF Conference, Dr. Malia Edwards shares how connecting with the CHM community gives deeper meaning to her research and why eye donation is vital to advancing it. #CureCHM

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Kevin Scott — a mental health counselor and member of the CHM community — shares his personal journey with choroideremia, the emotional impact of vision loss, and how support and mindset can make all the difference. #CureCHM

youtu.be/fVnznbd6hCo?...

Hear from Thomas Peterson, a longtime CRF supporter and CHM parent, as he reflects on his 2025 CRF International Conference experience and what the CRF community has meant to him over the years. #CureCHM

youtu.be/i0b2WUeHg68?...

Celebrate Your Birthday & Support Sight-Saving Research!

🎉 Got a birthday coming up? Celebrate with purpose! Start a virtual fundraiser for the Choroideremia Research Foundation to support sight-saving research.

Facebook: www.facebook.com/fundraisers
CRF Page: curechm.salsalabs.org/p2p

#BirthdayFundraiser #CureCHM

Welcome Mike McConnell, PhD, CRF’s New Chief Scientific Officer!

Welcome Mike McConnell, PhD, CRF’s new Chief Scientific Officer! Mike is a neuroscientist with expertise in stem cells, genomics & rare disease. He’ll help accelerate CHM research & keep our community informed.

#chiefscientificofficer #curechm

Ask the Dr. Q&A panel and attendees

Gene Therapy Advancements Session attendees

CRF Board of Directors and Kathi Wagner, CRF Executive Director

Mike McConnell, PhD, CRF Chief Scientific Officer, speaking at closing session

Days 3 & 4 of the 2025 CRF International Conference were packed with connection, learning, and CHM updates — from gene therapy to tech, hobbies, and health.

Thank you to all who joined us in Bloomington, MN. We hope you’ll be part of the next CRF International Conference in 2027!

#CureCHM #CRF2025

Group of CHMers and family members

CRF Director of Advocacy with Researchers/Presenters

Mall Walk and Team CHM Fun Run Group in front off the CRF

Large Group Conference Session

The 2025 CRF International Conference is off to a great start! 🙌

We kicked off with registration, the Youth Meet & Greet, happy hour & our Welcome Reception. Day 2 was filled with learning & connection — CHM 101, optogenetics, health, genetic counseling & more!💡🧬

#CureCHM #CRFConference2025

One week ‘til the 2025 CRF Conference! 🎉
June 25–28 | Radisson Blu, Mall of America

Science, support, youth events & more—don’t miss it!

📄 Schedule: www.curechm.org/wp-content/u...

#CRFConference2025 #CureCHM #CHMStrong

This past Saturday, Team CHM participated in the 12th Annual Million Dollar Bike Ride in Philadelphia to raise awareness and research funding for choroideremia (CHM).
@odc-upenn.bsky.social

#TeamCHM #MillionDollarBikeRide #RideForRare #CureCHM #CHMStrong #PennMDBR #PennMedMDBR2025

Team CHM is riding in the 2025 Million Dollar Bike Ride to fund CHM research!

🚴 Team CHM is riding in the 2025 Million Dollar Bike Ride to fund CHM research! We're biking in-person + virtually on June 14 to fight choroideremia — and it’s not too late to help.

Donate today: curechm.salsalabs.org/milliondolla...

#CureCHM #RideForRare

Research - Gene Trials and Evolving Therapies - CureCHM CRF advances research on choroideremia (CHM) through gene therapy, DNA editing, and stem cell therapy. Join us in the fight for a cure.

⏳ Reminder: CRF 2025 Research Grant proposals due June 30!

Funding available for gene therapy, retinal degeneration & CHM research — including the prestigious Randy Wheelock Award.

Apply now: www.curechm.org/research/#fu...

#CureCHM #GeneTherapy #RetinalResearch #RareDisease

Choroideremia Research Foundation Announces Six New Global Grants to Accelerate Vision Science CRF awards six global grants to advance CHM research, spanning AI, gene editing, and more—driving progress toward treatments for this rare retinal disease.

Choroideremia Research Foundation Announces Six New Global Grants to Accelerate Vision Science

#CureCHM #VisionResearch #CRF

www.einpresswire.com/article/8194...