Communities
- Number: 43 (no change)
- Activity: down over the summer, starting to build again (normal seasonal pattern)
Chan-Zuckerberg Initiative Grant
We were disappointed not to be selected to receive a grant. Our request to be included in the networking events, however, has been accepted and we have had one contact already. Tom is the lead for this.
Site enhancements and improvements
- SEO Improvement
Work continues to improve our SEO by improving exposure on social media, and by creating landing pages on all of our communities which are dynamic, reflective of the community, and which have keyword-rich content.
- New Landing Pages
Landing pages with customized content are being installed one by one on the communities. Have a look at one of the latest: https://lymediseasesupportnetwork.org/
New major initiatives
- Registry
The beta version of the patient registry has been tested by a number of patient members and feedback noted and responded to. We have started a number of implementation projects:
- As a number of our communities are actually several diseases and there are with many of the diseases with co-morbidity, Tom is working with the Missoula college Coding Classes to list the appropriate IDC-10 codes to enhance the search and database
- Our patient volunteer, Mark, who manages our Email lists, is building a list-serve email address for each community that can be the forwarding point for industry/academic interest in studies and trials so anonymity will always be maintained by us
- We have started developing monetization strategies with our development partner at My Rare Data.
Work continues on our self-advocacy project. We are considering using the very user-friendly open source software, Moodle, to develop the instructional units for site usage, Self-Advocacy, Patient Registry and other Training modules.
Ongoing and Future Projects/initiatives
- Recruitment and training of Moderators — with the help of our Lead Moderator, Richard
- Possible re-location of Learning Units (Interns, Moderators, Patient Advocacy) to a location shared by another organization using the software “Moodle”.
Staff Team (receiving honoraria)
- ModSupport (Sharon, Merl) — check all sites daily, and provide advice, support and administrative support as needed
- Lead Moderator (Richard) — recruitment, coaching, host remote social events, encouraging online presence and communication.
- ED (TJ and Clasina)