… Parent support/patient advocacy groups for rare genetic disorders have emerged as … social
and intellectual interaction between families, affected individuals, researchers and healthcare …

… 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 …

… 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. …

… 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 …

… sufficiently inclusive to other social groups affected by the epidemic", and similar concerns
have been raised by social scientists who have studied patient advocacy for breast cancer …

… to support and help each other in mutual-aid selfhelp groups, commonly called support
groups. … Advocacy: Parent groups testify at congressional hearings on child welfare and family …

… This information may be made available as hard copies in a physician’s office, at a support
group, and online on patient advocacy group websites. Within the USA brain tumor advocacy …

… 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 …

… The organization promoted advocacy and proposed that individual parents should lobby
target people and groups; develop support groups; build political support; and promote new …

… Following approval from the institutional review board, participants were recruited through
community agencies and organizations (eg, parent support groups) in a large, Midwestern city…