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Objavljeno: 03.08.2016.

U Hrvatskom savezu za rijetke bolesti otvoreno je radno mjesto Community manager na RareConnect-u. Riječ je o poslu na neodređeno, na projektu kojeg vodi Europska organizacija za rijetke bolesti (EURORDIS).

Zainteresirani i oni koji zadovoljavaju uvjete mogu se javiti sa životopisom na engleskom jeziku na mail hsrb.posao@gmail.com

Napominjemo kako su poznavanje engleskog i njemačkog jezika obavezni.


U nastavku je oglas:



Position: Community Manager



Responsible to Web Communications Senior Manager



Contract duration: Permanent



Location: Croatian Alliance for Rare Diseases Headquarters, Ivanicgradska 38, 10000 Zagreb



Position Overview



Rareconnect.org is an online social network for patients & families to connect with one and other to support and share vital experiences on aspects of living with a rare disease as well as for rare disease advocates to connect and work together. Organized into disease (or symptom) specific communities, the platform also provides links to quality information and involves patient associations in the governance and growth of each community. 


The Online Patient Communities Manager will be based in the office of the Croatian Rare Disease Alliance in Zagreb. (S)he is responsible for working directly with the RareConnect team, based in Barcelona, in:


• Including people from new language areas (e.g. Serbian/Croatian/Macedonian/Slovenian) in RareConnect activities while working to increase participation from German speaking populations.

• Outreach and support to the Balkan, German speaking populations and patient associations for inclusion in RareConnect and EURORDIS activities.
• Recruitment, and managing relationships and communication with German and Balkan speaking moderators.
• 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, German.
- 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: e.g. Croatian/Serbian.
- Follow-up with requests to create new rare disease communities and discussion groups for patients and families on RareConnect, including organising content in the online back office.



Community Support & Networking


- Assist the RareConnect team in Barcelona with responding to requests and communications with German, 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.
- Adding new content and managing translations of RareConnect across the current 8 languages with a view towards growth of content in Serbian/Croatian and German.


Promotion and Quality Assurance


- 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
- Adapt promotional materials, Google Adwords campaigns, social media posts, and email campaigns in German and Serbian/Croatian languages in print and electronic format.




- Will spend 6 sessions of one week spread over one year in Zagreb or Belgrade and one week per year in Barcelona for team work sessions.







- Languages: native Serbian/Croatian, high level of spoken and written English with working capacity in another European language, ideally German.
- Good 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.
- 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.



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