About Rare Disease Communities (RDC)

Geschrieben von The RDC Team, published mehr als 2 Jahre.

Rare Disease Communities 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. Organized into disease 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 a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).

Project Objectives

  • An International meeting place for patients & families
  • Multilingual enabled
  • Facilitate patient & carer peer support
  • Empower patients & carers to trust their experience
  • Facilitate progress in research through Patient Generated Knowledge
  • Build relationships by inviting intervention from medical professionals

Proposed Objectives

A Community Homepage to display the latest community activity:

  • Information pages written by experts and patients, often based on synthesis of patient generated knowledge
  • Forums to facilitate patient meeting & exchange
  • Mailing-lists for more private conversations
  • Patient Testimonies via photo & video
  • Patient & Carer Blogs
  • Online patient profile (can be public OR private)
  • Social Networking capability to make virtual patient friends to support and exchange with
  • News feed sourced from external RSS quality newsfeeds
  • Events calendarrelating to the community
  • Downloads of key documents e.g. leaflets, letters etc.
  • Customised Rare Disease Search Engine to orient visitors to relevant rare disease websites

Patient Organizations Participation

An international online patient community is an ideal opportunity for patient organizations to engage with patients while collaborating with similar organizations on an international level in the governance of the community.

In order to facilitate this, the Rare Disease Communities portal will offer the following opportunities to patient organizations:

  • Actively display the participation of the respective patient organizations in the community’s governance
  • Display the patient organization’s logo, website and other details
  • Opportunity for the patient organization to write a dedicated blog within the community
  • Opportunity to highlight events being organized by the patient organization
  • Play a role in defining the information content of the community
  • Play an active role in the governance of the community by participating in governance meetingsnominating patient moderators to ensure that the forum is a safe place to meet

Acknowledgements

Rare Disease Communities is grateful to the following individuals/organisations/companies for their contribution to making this project a reality:

Application development:  Rare Disease Communities is built using Open-Source technology.  A big thanks to Nicolas Perriault @ http://akei.fr

Concept and initial design by IDEO with further design consultation by Gilles @ pixenjoy.com

HTML/xHTML and Javascript development byTelly @ bouctoubou.com

Project Management by Sébastien Solere

Patient group liason consulting by David Oziel

For further information please contact us.

Geschrieben von The RDC Team, published mehr als 2 Jahre.