(2011) organizations families attend their annual “Dravet Weekend [22] Away” JISC United Kingdom NMDs Patient The MDC as a patient forum as well as a Not specified • (2011) organizations Facebook page and Twitter account [54] Black United States SMEI Patient The IDEA league established an online network The online family forum has helped to identify • • (2011) organizations allowing for social networking between families in challenges in the care of Dravet syndrome [22] online forums patients, including access to care, difficulties in diagnosis, treatment disparities among providers, and the need to define associated comorbidities Information gathered in the online forums has • stimulated research into associated conditions (e.g., facial anomalies) Black United States SMEI Patient The IDEA League has organized social gathering Not specified • (2011) organizations for patients and their families [22] Lasker United States PBC Patient The PBCers Organization provides electronic Patients were found to use the online resources • • (2005) organization mailing lists (listservs), chatrooms and message provided by the PBCers Organization, [49] boards for use by patients and other informational particularly the Daily Digest, to discuss resources biomedical issues (e.g., medications), but framed within the context of offering support to their peers United States VHL Patient The VHLA hosts an Annual Family Meeting Not specified • organizations Alliance (VHLA) (2014) [40] Landy Not specified Rare diseases in general Patient Patient organizations organize support groups Not specified • (2012) organizations and maintained toll-free support lines [55] Financial support for patients Black United Kingdom SMEI Patient The IDEA League UK has helped families obtain Not specified • (2011) organizations medical equipment by funding the purchases or [22] helping families to obtain discounts Black United States SMEI Patient The League created a medication assistance fund Not specified • (2011) organizations to help financially disadvantaged families obtain [22] stiripentol when funding is not available
(2011) [22] organizations families attend their annual “Dravet Weekend Away” JISC (2011) [54] United Kingdom NMDs Patient organizations • The MDC as a patient forum as well as a Facebook page and Twitter account Not specified Black (2011) [22] United States SMEI Patient organizations • The IDEA league established an online network allowing for social networking between families in online forums • The online family forum has helped to identify challenges in the care of Dravet syndrome patients, including access to care, difficulties in diagnosis, treatment disparities among providers, and the need to define associated comorbidities • Information gathered in the online forums has stimulated research into associated conditions (e.g., facial anomalies) Black (2011) [22] United States SMEI Patient organizations • The IDEA League has organized social gathering for patients and their families Not specified Lasker (2005) [49] United States PBC Patient organization • The PBCers Organization provides electronic mailing lists (listservs), chatrooms and message boards for use by patients and other informational resources • Patients were found to use the online resources provided by the PBCers Organization, particularly the Daily Digest, to discuss biomedical issues (e.g., medications), but framed within the context of offering support to their peers Alliance (VHLA) (2014) [40] United States VHL Patient organizations • The VHLA hosts an Annual Family Meeting Not specified Landy (2012) [55] Not specified Rare diseases in general Patient organizations • Patient organizations organize support groups and maintained toll-free support lines Not specified Financial support for patients Black (2011) [22] United Kingdom SMEI Patient organizations • The IDEA League UK has helped families obtain medical equipment by funding the purchases or helping families to obtain discounts Not specified Black (2011) [22] United States SMEI Patient organizations • The League created a medication assistance fund to help financially disadvantaged families obtain stiripentol when funding is not available Not specified
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