post-bereavement support, disability benefits, respite care, and housing Boon Netherlands NMDs Patient The VSN keeps track of scientific development, Not specified • (2010) organizations annotates them, tries to clarify them, and reports [46] on them with disclaimers to the patient community Black United States SMEI Patient The League has a website containing information Not specified • (2011) organizations on the clinical course, etiology, epidemiology, and [22] treatment of Dravet syndrome and provides links to other international resources and support groups, and to educational financial and health care resources for children with special needs Information is available regarding opportunities • to fund & participate in research, local events in the Dravet syndrome community, genetic testing, and regional epilepsy centers providing care to patients Dunkle United States Rare diseases in general Patient Patient organizations created a database of Not specified • (2010) organizations medical information on rare diseases that both [47] patients and health care professionals may access Groft United States Rare diseases in general Patient Patient organizations are involved in educating Not specified • (2013) organizations patients, public, media, and healthcare providers [23] within the RDCRN Groft United States Rare diseases in general Patient Patient organizations provide disease-specific Not specified • (2013) organizations information for patients and families on RDCRN [23] website Seminara United States UCDs Patient The National Urea Cycle Disorders Foundation Not specified • (2010) organizations helped to design content for the UCDC website [24] and develop and distribute brochures to patients, families, and health care professionals United States VHL Patient The VHLA publishes a VHL Handbook, Not specified • organizations providing patients with tips on diagnosis, Alliance treatment, and ways of living with VHL (VHLA) (2014) [40] United States VHL Patient The VHLA answers questions for physicians or Not specified • organizations passes questions along to appropriate experts Alliance (VHLA)
post-bereavement support, disability benefits, respite care, and housing Boon (2010) [46] Netherlands NMDs Patient organizations • The VSN keeps track of scientific development, annotates them, tries to clarify them, and reports on them with disclaimers to the patient community Not specified Black (2011) [22] United States SMEI Patient organizations • The League has a website containing information on the clinical course, etiology, epidemiology, and treatment of Dravet syndrome and provides links to other international resources and support groups, and to educational financial and health care resources for children with special needs • Information is available regarding opportunities to fund & participate in research, local events in the Dravet syndrome community, genetic testing, and regional epilepsy centers providing care to patients Not specified Dunkle (2010) [47] United States Rare diseases in general Patient organizations • Patient organizations created a database of medical information on rare diseases that both patients and health care professionals may access Not specified Groft (2013) [23] United States Rare diseases in general Patient organizations • Patient organizations are involved in educating patients, public, media, and healthcare providers within the RDCRN Not specified Groft (2013) [23] United States Rare diseases in general Patient organizations • Patient organizations provide disease-specific information for patients and families on RDCRN website Not specified Seminara (2010) [24] United States UCDs Patient organizations • The National Urea Cycle Disorders Foundation helped to design content for the UCDC website and develop and distribute brochures to patients, families, and health care professionals Not specified Alliance (VHLA) (2014) [40] United States VHL Patient organizations • The VHLA publishes a VHL Handbook, providing patients with tips on diagnosis, treatment, and ways of living with VHL Not specified Alliance (VHLA) United States VHL Patient organizations • The VHLA answers questions for physicians or passes questions along to appropriate experts Not specified
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