Advocacy engagement: The role of information literacy skills.

P Nzomo, P Fehrmann - Journal of Information Literacy, 2020 - ERIC
… such as self-advocacy, social advocacy, patient advocacy, parent advocacy, and policy
advocacy, our paper examines what role IL skills play in making one an effective advocate. …

[PDF][PDF] Making Lyme Disease Law: The Role of Patient Advocacy in Health Law and Policy

M McPhail - Queen's Policy Review, 2017 - lymescience.org
… take actions to help people affected by those conditions and their families.Patient advocacy
groups often provide services, such as counselling and support groups, they disseminate …

Parent advocacy across the lifespan

MM Burke, KA Patton, C Lee - International Review of research in …, 2016 - Elsevier
… Relatedly, methods of advocacy may include a range of activities including gaining knowledge,
attending support groups, asking for services as well as having advocacy experiences …

The global role of patients, advocates and caregivers in rare diseases

M Nori, D Fisher-Vance, L Wuerth, R Colenso… - Future Rare …, 2023 - Future Medicine
… In response to this challenge, many patients, advocates and caregivers (PACs) have
established their own disease-specific advocacy and support groups to share knowledge and best …

FACES: An advocacy intervention for African American parents of children with autism

JN Pearson, H Meadan - Intellectual and developmental …, 2021 - meridian.allenpress.com
… Following approval from the institutional review board, participants were recruited through
community agencies and organizations (eg, parent support groups) in a large, Midwestern city…

Interventions: Preventive Management, Empowerment, Advocacy, and Support Services

JGR Kromberg - Albinism in Africa, 2018 - Elsevier
… The organization promoted advocacy and proposed that individual parents should lobby
target people and groups; develop support groups; build political support; and promote new …

21st Century Citizen Pharma: The FDA & Patient-Focused Product Development

J Paradise - American Journal of Law & Medicine, 2018 - journals.sagepub.com
role for patient perspectives in the regulatory process. This Article explores recent developments
in patient-… on the increasing role of patients, and patient advocacy groups, in agency …

[HTML][HTML] Internet use by parents of children with rare conditions: findings from a study on parents' web information needs

H Nicholl, C Tracey, T Begley, C King… - Journal of medical Internet …, 2017 - jmir.org
… Internet-based chat support groups for parents in family-based treatment for adolescent
eating disorders: a pilot study. Eur Eat Disord Rev 2013 May;21(3):215-223. [CrossRef] [Medline] …

Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis and Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy …

SC Titgemeyer - 2022 - kups.ub.uni-koeln.de
… to a support group were more likely support group participants [20]. Therefore, health
professionals ought to get better acquainted with the topic of social media support groups if they …

Rare disease, rare information: Investigating healthcare information use in online global disability support groups

T Wang - 2022 - search.proquest.com
… in a lack of knowledge among medical and healthcare providers, resulting in delayed or no
support groups, hospitals can establish digital platforms that provide systematic healthcare