Family Advisory Committee

The purpose of the PRRF Family Advisory Committee (FAC) is to build a community that supports rare retinal diseases through social networking, keeping families informed about PRRF’s research, advocating for education, grassroots fundraising for PRRF and our community, and promoting assistive technology.

Social Networking and Community:

To stay in touch with both the FAC and PRRF we invite you to join the PRRF Family Advisory Committee Facebook group and subscribe to the PRRF Sightlines newsletter to stay up to date with the latest news and information. Listen to the Door onze ogen Podcast for inspiring stories of visually impaired young adults.

Events are a great way to learn more about visual impairment and to connect with other families. The FAC regularly hosts online workshops and we are instrumental in the planning of the annual PRRF Family Connection Conference.

The FAC plans to develop disease-specific networks enabling representatives for specific retinal diseases—such as CXLRS, ROP, FEVR, PFCS, or Norrie Disease—to build a family network focused on providing relevant information and support.

Another great way to connect with other families and build community is to volunteer. Check out all the ways you can volunteer and use your talents to support PRRF and the visually impaired community here.

Rare Retinal Diseases and PRRF Research:

The Foundation has made significant progress in reducing blindness in premature infants. However, there is still much to be done to advance translational research and discover treatments or cures for other retinal diseases that affect infants and children daily. Learn more about the retinal diseases supported by PRRF and the ongoing research efforts.

Educational Advocacy:

Parents of visually impaired children often need guidance when their child starts school. Visit the parent’s page for helpful information, resources, and contacts.

Assistive Technology:

Technology today allows low vision and blind adults to be more employable. The key is to have a lot of tools in their toolbox. The more they know, the better. For more information and a list of helpful devices visit the parent’s page.

Fundraising:

We aim to build a global fundraising team that empowers families to plan and run fundraising events for PRRF and our community. We offer recruitment and publicity support, including personalized thank-you notes and follow-up communication with donors. We provide financial assistance to families for travel and other visit-related arrangements. Click here for more information about fundraising.

Social Networking and Media

Join the Facebook Group

Attend an Event

Komende evenementen

Get Involved

A great way to connect with other families and build community is to share your time talents to support PRRF and the visually impaired community. Whether you assist with events, write an article, or help with the podcast, your involvement makes a meaningful difference.

Volunteer Opportunities

Educational Advocacy

Partnerships between schools, families, and community organizations provide essential support for children with low vision. By bringing together parents, educators, school boards, and service agencies, these collaborations create opportunities for learning success.

Education Info

Rare Retinal Diseases and PRRF Research

The Foundation has made remarkable strides in reducing blindness in premature infants, improving outcomes for countless children. However, there is still critical work ahead to further translational research and develop new treatments or cures for other retinal diseases impacting infants and children every day.

Ongoing Research

Assistive Technology

Technology today allows low vision and blind adults to be more employable by providing innovative solutions that enhance accessibility and independence. The key is to have a lot of tools in their toolbox, as different devices and software cater to different needs. The more they know and can utilize, the greater their opportunities for success in both education and the workforce.