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Online Patient Communities

Online Patient Communities. Alexandra Freitas , Online Communities Coordinator. Phone 203.744.0100 Fax 203.798.2291 Address 55 Kenosia Avenue, P.O. Box 1968 Danbury, CT 06813. NORD/ EURORDIS Partnership . NORD and EURORDIS entered a strategic partnership in 2009

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Online Patient Communities

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  1. Online Patient Communities Alexandra Freitas, Online Communities Coordinator Phone 203.744.0100Fax 203.798.2291 Address55 Kenosia Avenue, P.O. Box 1968 Danbury, CT 06813

  2. NORD/ EURORDIS Partnership • NORD and EURORDIS entered a strategic partnership in 2009 • The goal is to think globally on issues of education, advocacy and awareness • Specific initiatives include Rare Disease Day and the Rare Disease Communities

  3. RareConnect • Utilized Social Media Opportunity to meet the needs of the patient community • Connecting Rare Disease Patients Globally • Hosted by trusted partners • EURORDIS and NORD work with disease-specific patient organizations to provide a safe environment for patients and their families

  4. Basic Principals • Guaranteed by EURORDIS & NORD • Website hosting and security • Maintenance and long-term development • Support staff • Governance (linked to patient organizations and patients) • Securing financial contributions • Strategic guidance for online moderation • Establish the international connections and networking necessary for a successful community • Each community built in consultation with patients

  5. 32 Current Communities • Alkaptonuria (AKU) • Alstrom Syndrome • Alternating Hemiplegia • Atypical Hemolytic Uremic Syndrome • Behçet’s Syndrome • CAPS • CDG • Coats Disease • Cystinosis • Dravet Syndrome • DysNet • Ehlers-Danlos Syndrome • EpidermolysisBullosa • Evans Syndrome • Familial Mediterranean Fever • Fibromuscular Dysplasia • Glut1 DS • Hereditary Spastic Paraplegia • Lipoprotein Lipase Deficiency • Mastocytosis And Mast Cell Activation Disorders • Moebius Syndrome • Multiple Myeloma • Multiple System Atrophy • Narcolepsy • Neuroacanthocytosis • Paraneoplastic Neurological Syndrome • Pulmonary Hypertension • Rett Syndrome • Trimethylaminuria • Von Hippel-Lindau • WaldenstromMacroglobulinemia • WHIM Syndrome

  6. Discussion Topics

  7. Empowering the Global Conversation • Situation: Creator of French Muckle Wells Association tells life story, subtitles are used to make the video available in 4 other languages • Value: Reached 1,700 views on YouTube for a rare disease with incidence of 1:1,000,000

  8. New Relationships • Situation: Formal patient groups and patient advocates come together from 5 countries • Value: Cooperation on project leads to discussions on forming international federation of Familial Mediterranean Fever groups

  9. Patient interaction crosses language barrier • Situation: Patient with Behcet's disease posts their thoughts and compiled research on daily living • Value: Vibrant exchange across French and Italian due to human translation, connecting isolated patients

  10. Isolated families connect • Situation: Atypical HUS affects 1-3 in a million people • Value: Community brings together multiple groups and languages to share 20 stories and write 67 forum posts in 9 months

  11. New opportunities to connect • Situation: Two members of Glut1 Yahoo! group never knew eachother’s story. Stories were collected, translated and posted on RareConnect. • Value: Hi June, I just read Dylan's story! I could of literally cut and pasted for Nico's! They sound like they have so much in common! I would love for them to meet someday. We live in Woodland Hills, Ca. Are you still in California?

  12. New opportunities to connect • Situation:A member of the Waldenströmmacroglobulinemia community posts about being exposed to contaminants as a first responder at the WTC and then his recent diagnosis. • Value: Three other community members comment on the same experience. They were all exposed at Ground Zero and now have this rare cancer.

  13. Involvement of medical experts • Situation: CDG Community organizers wanted to increase families’ understanding of research. • Value: Participating researchers established closerties to the patient community and helped summarize their work in patient friendly language.

  14. Why We Built Something New • Wanted it to be a safe space • For Patients by Patients • Privacy is a large concern in this community • Who owns the information • Wanted more control over lay out and information • Translation Service

  15. Interested in RareConnect? Alexandra Freitas afreitas@rarediseases.org

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