Patient support groups

Patient support groups

Patient support groups are organizations, usually non-profit, that focus on supporting patients with specific diseases as well as their relatives. These organisations offer individual support services to patients, e.g. providing disease information and emotional support, addressing psychosocial or financial issues, providing the context when patients return from a doctor’s appointment, or just facilitating the sharing of experience.

Most support groups are usually facilitated by leaders who have personal experience in the disease and became advocates for others. The primary goal of most groups is to ensure that no one living with the disease or condition that the group serves ever has to feel alone again.

There are thousands of patient organisations in the EU Member States and affiliated countries, plus around three dozen patient organisations operating on a pan-European Level.

PatientView’s “European Patient Group Directory”

PatientView maintains an European Patient Group Directory, currently available in its 4th edition (2011-2012). The Directory lists overview and contact details of almost 200 key pan-European health advocacy groups. Three indexes allow readers to access the details on each group by its subject area/specialty, by its full name, or by its acronym.

See the European Patient Group Directory here: http://www.patient-view.com/directories.htm

Member organisations of EMA’s Patients’ and Consumer’s Working Party

More than 30 pan-European patient and consumer organisations from different disease areas have been accredited to work with the European Medicines Agency (EMA). All of these organisations are not-for-profit with a EU-wide mandate. Some of them are umbrella organisations encompassing a number of smaller or national organisations, while others have a particular focus on a specific area such as rare diseases, cancer or HIV/AIDS. They are members of the Agency’s “Patients’ and Consumers’ Working Party” (PCWP).

See the list of EMA PCWP members organisations:
http://www.ema.europa.eu/ema/index.jsp?curl=pages/partners_and_networks/q_and_a/q_and_a_detail_000082.jsp&mid=WC0b01ac0580035bf2

Orphanet Database for rare disease patient organisations

EU-funded Orphanet operates a database of patient organisations in the field of rare dieases. It currently lists more than 2300 disease-specific patient organisations, of which almost 1900 are national disease-specific, and around 70 operate on a pan-European level and 45 on an international level.

See Orphanet database http://www.orpha.net/consor/cgi-bin/SupportGroup.php?lng=EN
http://www.zeit.de/index

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