Community Manager
Patient groups of Rare-diseases (Diagnose-Community) are mostly run by volunteers. And often these volunteers suffer from the burden-of-the-disease; they need to balance their energy between Personal-, Family-, Care-, Career- and volunteer tasks.
One of the most important tasks in a (organized) patient group is to provide information that is NEEDED by the members of the group (and anybody araound that disease). Note that this is not only GENERIC AVAILBLE INFORMATION, but sometimes the INFORMATION is not (Yet) avaible!
The WaihonaPedia community manager provides support to these patient groups to do just that!
The WaihonaPedia community manager can be asked to create and nurture long-term relationships with members inside and around the patient-group. The WaihonaPedia community manager will resolve any issues that arise to ensure members are satisfied with information provided by the support group.
The WaihonaPedia community manager should be an excellent communicator who’s able to grasp needs of Patient, Family or Supporters and brainstorm ways to fulfill them. If the WaihonaPedia community manager has a background in client service and knowledge of the world of Rare Diseases, we’d like to meet you.
The Community manager takes care of the important relationsships with people IN and AROUND the patient group.
We consider the following relationships;
- between People united by a disease (Patients with a specific Diagnose, Family of that patient, Friends of that patient). The communication between these people, as far as it is 'public' within the Diagnose-Community (Patient Group), often holds signals about NEEDS and INTERESTS. The Community manager will REPORT about the IDENTIFIED NEEDS and INTERESTS with the Patient Group.
- between People in the previous Group with Experts. This can be in the form of a Question (ask the Expert), in the form of reactions to a shared experience story, in the form of a reaction to a published article from the expert. The community manager will again identify NEEDS and INTERESTS and initiate contacts between PEOPLE. The Community manager will identify required FOLLOW-UP actions
- between PEOPLE from the previous groups and the WaihonaPedia platform. In this case the people are called 'USERS'. The community Manager will be a contact person when a USER has a question or suggestion and will follow-up
- between REPRESENTATIVES (often board members) of the patient group or the experts groups and WaihonaPedia Foundation. The community manager will translate NEEDS, DEMAND into SOLUTION creating activities like setting up a Themeroom, Organize questionairres-lists.
Responsibilities
- Build relationships with as many as possible people from the Diagnose-community, especially the 'active' and/or 'eager' volunteers
- by listening (through social media and/or participation in meetings)
- Create plans to address needs
- Advise on creating succesful processes
- Schedule regular meetings (online) to ensure community members are satisfied
- Activate and coach members towards and on the WaihonaPedia platform
- Act as point of contact for needs, complaints and support solving issues as appropriate
- Ensure both the WaihonaPedia Foundation and Patient groups with a 'contract' adhere to contract terms
- Study 'ideas' to find new ways to improve happiness of the communities
- Collaborate with internal teams (e.g. Content management, Software Devs) to address communities’ needs
Capabilities
- A proactive attitude (think with us)
- A accurate record keeping of tasks that are agreed on
- Experience with online platform (Registration, Login, manage passwords)
- Understand WIKI-way of working or eagerness to learn the difference between WIKI-way and CMS-way(Wordpress, Sharepoint)
- Patience
- Excellent communication skills
- Flexibility to deal with unexpected events
- Reading/Writing in English and Dutch
- Willingness to perform Functional Management tasks on the WaihonaPedia platform
- such as: Approve users, Test new/changes functions, Translate texts (for the platform), Check settings
