Job description:
Online Communities Manager (Senior)
Belgrade
RareConnect, rare disease communities, is an online social network for patients and families to connect with one another to support and share vital experiences on aspects of living with a rare disease as well as for rare disease advocates to meet and work together. Organised into disease (or symptom) specific communities, the platform will also provide links to quality information and involve patient associations in the governance and growth of each community. The project is an initiative of EURORDIS (European Rare Disease Organisation).
We are seeking candidates for the full time position Online Patient Communities Manager that will be based in Belgrade, Serbia working alongside the National Alliance for Rare Diseases of Serbia (NORBS) and is responsible for working directly with the RareConnect team, based in Barcelona, in:
- Including people from new language areas (Serbian/Croatian, Russian) in RareConnect activities while working to increase participation from German and Italian speaking populations
- Outreach and support to the Balkan, Russian, German, and Italian speaking populations and patient associations for inclusion in RareConnect and EURORDIS activities
- Increasing the number of patient surveys RareConnect can do through its online patient communities
Specific tasks include, in particular, but not limited to:
Contributing to RareConnect growth
- Identifying potential new rare disease communities and discussion groups and liaising with the various stakeholders to facilitate their inclusion in conversations on rare diseases taking place on RareConnect
- Develop a strategy to grow the number of RareConnect members, moderators, patient associations, and contributors from the following language areas: Serbian/Croatian, Russian, German and Italian
- Work directly with the Serbian Alliance, NORBS and other regional rare disease alliances on including their existing contacts in RareConnect while communicating about services available from those alliances to new contacts
- Participate in identifying and building relationships with volunteers for each community. Keep connected to these individuals to include them in the rare disease network
- Assist in the project management of translation and verification of RareConnect.org in new languages: Russian and Croatian/Serbian
Community Support & Networking
- Assist the RareConnect team in Barcelona with responding to requests and communications with Russian, Serbian/Croatian speaking people
- Identify the needs of people using RareConnect and match those needs to existing contacts or information available
- Stimulate conversation in communities and share resources with people who have basic questions on finding information and support about their rare disease
Promotion and Surveys
- Travel to conferences, workshops, and meetings representing RareConnect with an ability to explain the website and its benefits
- Liaise regularly with the RareConnect team to suggest feature improvements and technical innovations based on feedback from patient members
- Participate in strategy review on ways in which to build engagement with the platform and promote maximum benefit from the platform
- Work to implement the Patient Voices survey program on RareConnect in order to gain new knowledge from the communities on RareConnect while sharing that knowledge with the public in creative ways
Profile:
Essential:
- Languages: native Serbian/Croatian, high level of spoken and written English with working capacity in Russian, other additional languages (German or Italian)
- Excellent project management capabilities to stay on top of details, deliverables and anticipate and propose solutions to potential roadblocks to keep RareConnect growing
- Demonstrable experience in a non-profit environment as a volunteer, beneficiary, or staff member
- Knowledge of rare diseases, online communities, social media channels, and using the internet to improve the lives of people living with a rare disease through information and networking
- Experience with website content management
- Experience in working with volunteers and maximizing limited resources to boost a project’s reach and inclusion of beneficiaries
- Ability to travel to regional meetings and EURORDIS meetings to present opportunities for collaboration
- Self-starting and problem solver when confronted with complex challenges
- Ability to learn new technology and online tools
- In addition (s)he will demonstrate examples of successful teamwork in her/his professional work
Preferred:
- Editorial experience in writing content and summarizing complex ideas
- Significant experience working in the communications area and displaying a high level of sophistication in representing an organisation appropriately
- Studies in communication or marketing
- Experience in hosting online meetings or webinars
Deadline for applications: 13.10.2015.
Nacionalna organizacija za retke bolesti Srbije
- Đušina 10, lokal 6, Beograd, Srbija
- PIB: 106848054
- Matični broj: 28027630