Fundraising & Awareness Resources

Odylia Therapeutics is changing the way treatments will be developed for rare diseases. Our work depends on the grassroots efforts of people throughout the world who believe in our mission and want to support patients with rare diseases like LCA6 and Usher Syndrome. Increasing awareness about rare diseases and the need for treatments, regardless of prevalence or commercial viability, and raising much needed funds will help us reach our goal of bringing these treatments to clinical trials.

Below are resources you can use to share information and help raise funds. New resources will be added regularly so check back for new information. Should you have any questions, please reach out to


Increase Awareness

One Page Information Sheets – print or email these sheets to people who might be interested in learning more about Odylia and our programs.


Sample Social Media Posts – use these on your social media outlets to reach out to your network, the more people who know about our work, the better. Consider asking your contacts to sign up for our e-news (it goes out twice a year) and/or to follow us on social media.

  • LCA6 & RPGRIP1 Information
  • Fundraising/Donation Requests
  • Graphics to post
  • Hash tags: #RPGRIP1 #raredisease #LCA6 #OdyliaTherapeutics #genetherapy


Fact Sheets


Videos – visit the Odylia Therapeutics YouTube Page to see recordings of past RPGRIP1 webinars


Press Releases, Articles, & Information Sheets


Slide Decks


Graphics & Photos


Raise Funds

Peer-to-Peer Fundraising – visit the Odylia P2P website (USA-based) to set up a team or raise funds as an individual. Ask friends, family, and people in your network to make a donation. If you would like to fundraise outside of the USA we suggest using a different donation processing platform. You can setup your international fundraising page here. Feel free to use the template file below (.ppt) to add information about yourself or your loved one. If you want to generate a QR code specific to your fundriasing page, email us at once you establish your page and we can send you a page specific QR code.

Template RPGRIP1 Fundraising

Special Events – you may be interested in organizing a fundraising event, below are just a few ideas but the possibilities are limitless. Odylia staff can answer questions, provide ‘how to’ sheets, and assist with online registration forms. Contact  for more information.

  • Golf Tournament
  • Round Up Campaign
  • Restaurant Events – tip donations & night for charity
  • ‘Taste Of’ events
  • Community Based Events with Other Organizations
  • Run/Walk/Bike
  • Dining in the Dark


coming soon! Sample letters– donors, sponsorship, etc

Questions? We’re here to help!