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 hgreene@odylia.org.
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
- Deloitte Cost of Inherited Retinal Diseases Study
- more coming soon
Videos – visit the Odylia Therapeutics YouTube Page to see recordings of past RPGRIP1 webinars
Press Releases, Articles, & Information Sheets
- What is Odylia
- RPGRIP1 Program Granted Orphan Drug Designation and Rare Pediatric Disease Designation by the FDA
- How Gene Therapy works
- Anc80 info
- Whitepaper: Nonprofit Pharmaceutical Companies: Background, Challenges, and Policy Options
Slide Decks
- Non-confidential slide deck on Odylia’s RPGRIP1 gene therapy program
- Odylia’s Vision deck- Introduction to Odylia Therapeutics
Graphics & Photos
- Odylia logo .png
- Odylia logo .jpeg
- Odylia logo .pdf
- Gene Therapy Development Process
- coming soon! Photo Frame to be used at events
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 info@odylia.org once you establish your page and we can send you a page specific QR code.
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 hgreene@odylia.org 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