OPHN1 Foundation

Get Involved

Get Involved

Join the OPHN1 community and get involved with OPHN1 through advocacy, research, and family support.
Get Involved

Ways to Get Involved with OPHN1

We need your help. By working together, families, clinicians, researchers, and supporters can build knowledge, strengthen care, and accelerate progress toward treatments. Choose a path to make an impact today.

You can get involved with OPHN1 in many ways. Support research, share resources, volunteer your time, connect families, and help raise awareness. Every contribution matters, and every action helps move the community forward.

Learn more About Us, connect with Families, or explore The Science. You can also support our work directly through our Donation Page.

Participate in Research

By joining the clinical registry, sharing your experience, and donating a sample to the biorepository, you help build the evidence needed to move research forward faster.

 

Learn how →

Volunteer With Us

From graphic design to family outreach, there are many ways to lend your talents – whether you can give an hour a month or take on a bigger role. Join our team of volunteers making a difference.

Learn More →

Join the Mailing List

Be the first to know about research updates, community events, and ways to get involved. Subscribe and stay connected with our community.

 

Subscribe →
Give

Choose What Your Gift Supports

Give where it is needed most, or choose an area of work that matters most to you.

Support Our Work
Your choice will appear on the PayPal donation page.
Where Needed Most
Give the Foundation flexibility to use your gift where it can have the greatest impact.
Understand OPHN1
Help us learn how OPHN1 affects people, including girls and women, throughout life.
Find & Access Treatments
Help us explore promising treatments and move them closer to people with OPHN1.
Measure What Matters
Help build better ways to tell whether OPHN1 is changing and whether a treatment is helping.
Current Priorities
Want to support something more specific? These are areas where focused support can make a difference now.
ROCK Inhibitor Pediatric Safety Data
Find & Access Treatments
Help build the information needed to better understand the safety of ROCK inhibitors in children.
Support this priority →
Understanding OPHN1 in Girls & Women
Understand OPHN1
Help us learn why females with OPHN1 variants can be affected so differently.
Support this priority →
Natural History Study
Understand OPHN1
Help document how OPHN1 affects people over time so families and researchers know what to expect.
Support this priority →
Linking Biology to Behavior
Measure What Matters
Help connect measurable biological changes with changes in behavior and daily function.
Support this priority →
Prefer to give your time instead?
Volunteer

We Always Need More Hands

As a growing organization, our need for support continues to expand. Whether you can offer an hour a month or a specialized skill, every contribution helps advance our mission for the OPHN1 community.

Family Support
Connect directly with OPHN1 families. Welcome new families, identify needs from our community, and help coordinate meetups.
Committee Involvement
Join our Fundraising, Family Advisory, or Scientific Advisory Board when opportunities are available.
Specialized Support
Bring professional skills such as legal, social media, medical, research, fundraising, or advocacy experience.
General Support
Help with practical tasks such as data entry, email outreach, event support, and other behind-the-scenes work.