IAPO MEMBERS - INTERNATIONAL ORGANIZATIONS

Alzheimer’s Disease International (ADI)
Alzheimer’s Disease International (ADI) is the international federation of 77 Alzheimer associations around the world. It was founded in 1984 as a network for member associations to share and exchange information, resources and skills. Each of ADI’s 77 members is a non-profit association focused on supporting people with dementia and their families.
ADI encourages the development of Alzheimer associations through its work, promotes public awareness about dementia and disseminates accurate information. It collaborates with other international organisations and encourages research into the global impact of dementia.

ADI has been in Official Relations with the World Health Organization (WHO) since 1996 and continues to work closely with the organisation to ensure that dementia is recognised on health agendas around the world. The secretariat is based in London. For more information, please see: www.alz.co.uk

Arthritis and Rheumatism International  
www.arthritis.org    

Cochrane Consumer Network
The Cochrane Consumer Network (CCNet) supports general public, health consumer and patient advocate participation in the work of The Cochrane Collaboration by enabling effective communication, training and guidance in providing a consumer perspective to Cochrane reviews, review summaries and other research activities within the Collaboration. It strives to disseminate information from Cochrane reviews, particularly in the area of complementary and lifestyle interventions.

The CCNet encourages consumers throughout the world to give their perspectives and have their say on priorities for health care. It encourages the concept of evidence-based practice with a forward thinking approach to improvement of health care. The network has more than 550 members in 50 countries around the world. The majority of members are based in the UK, Australia, US and Canada with an increasing number from the Middle East, Asia, and Africa. Some members are also WHO Patient Champions.

For more information, visit the Cochrane Consumer Network website: www.cochrane.org/consumers

Dupuytren Society

Dupuytren was set up in 2003. The purpose of the Society is to support the treatment of those with Morbus Dupuytren. Activities include informing members about evidence based treatment, advocating and supporting research, running patient forums to encourage patients to communicate with each other, and supporting therapy groups.

For more information, please see: www.dupuytren-online.info

Hepatitis Foundation International
www.hepatitisfoundation.com

International Consumer Support for Infertility Patient Leader Network
www.icsi.ws

International Painful Bladder Foundation - Associate Member
www.painful-bladder.org

International Patient Organisation for Primary Immunodeficiencies
www.ipopi.org

International Pemphigus Foundation
www.pemphigus.org

International Thalassaemia Federation (TIF - Cyprus)
The International Thalassaemia Federation (TIF) is a non-profit, non-governmental organization, founded in 1987 by a small group of patients and parents representing National Thalassaemia Associations in Cyprus, Greece, UK, USA and Italy – countries where Thalassaemia was first recognized as an important public health issue and where the first programmes for its control, including prevention and clinical management had started to be promoted and implemented.

For more information, please see: www.thalassaemia.org.cy

Lance Armstrong Foundationx
www.livestrong.org

Multiple Sclerosis International Federation
www.msif.org

Parents of Infants and Children with Kernicterus
www.pdpineline.org

Thrombosis Research Institute (TRI) – Associate Member
TRI is a unique, world leading, multi-disciplinary research organisation and charitable foundation, dedicated to providing excellence in thrombosis research, education and patient care.

By developing new strategies to prevent and treat thrombosis, TRI overall aims are to ultimately reduce healthcare costs and save millions of people’s lives.

For more information, please see www.tri-london.ac.uk

World Alliance of Neuromuscular Disorder Associations
www.wandaweb.org

World Federation of Hemophilia
www.wfh.org

World Federation of Incontinence Patients
www.wfip.org

World Headache Alliance
www.w-h-a.org

REGIONAL

Africa
Community Health And Information Network - (CHAIN)
Community Health and Information Network (CHAIN) is an international not for profit organisation, registered as a charity and company in the UK and Uganda.  Set up in 1998, CHAIN promotes the empowerment of people living with HIV and AIDS. CHAIN’s work is mostly undertaken in Africa where it has offices in Kigali, Rwanda and in Kampala, Uganda.

CHAIN was founded by a group of African professionals resident in the United Kingdom in the wake of the 1998 Geneva World AIDS Conference.  The Geneva
conference theme, "Bridging the Gap between the North & South" highlighted how Africa continues to bear the brunt of the epidemic and the burden borne
by communities as a result HIV and AIDS morbidity and mortality. It brought into focus the recurrent theme of the pervasive North-South divide, and the
need for persons with a foothold in both worlds to form bridges of understanding, advocacy focal points and vehicles for resource mobilisation in the effort to reverse the effects of the scourge of the epidemic.

For more information about CHAIN Uganda, please visit: www.chainproject.co.ug

Europe
Association of European Coeliac Societies (AOECS)
AOECS works on an international level to co-ordinate the exchange of information between coeliac societies in Europe that support those with gluten intolerance. It advocates for improved labelling of gluten free products and provides services to assist European coeliac societies.

For more information, please see: www.aoecs.org

European AIDS Treatment Group
www.eatg.org

Global Alliance of Mental Illness Advocacy Networks - Europe (Belguim)
GAMIAN-Europe is an international, non-profit, federation comprising users and consumers, family members, carers, health care professionals, representatives of government bodies and agencies, and other concerned parties who support or are interested in issues affecting those who suffer from a mental illness.

The purpose of GAMIAN-Europe is to promote information, and to encourage education and awareness of current evidence based knowledge regarding treatment and support available to those affected by mental illness.

GAMIAN-Europe actively supports and engages in research projects pertaining to mental illness and the dissemination of the results of such research. It will also offer assistance to member organisations where required and practical to develop support and training mechanisms for their members and to generally be involved in all areas of activity within the fields of mental health.

Essential to the mission of GAMIAN is the promotion of the understanding of mental illness, fight to stigma and encouragement of appropriate scientific research.

For more information, please see: www.gamian-eu

Iatrogenic Europe Unite-Alliance Foundation (Netherlands)
Iatrogenic Europe Unite-Alliance Foundation is an organization that focuses on the improvement of the position of the iatrogenic patients, victims of medical errors and on the improvement of patient safety in general in Europe.

IEU Alliance Foundation's Declaration 2005 contains information on the experiences of victims of medical errors and a description of  our objectives.  The epidemiological survey, 2006 shows the enormous number of victims of medical errors in many countries in Europe. Their 2007 Manifesto for victims of medical error, sums up recommendations for measures to improve the quality of healthcare and patient safety in Europe.

In June 2007 they formulated a Tell and Repair proposal which promotes openness and honesty after the occurrence of a medical error and promotes remedial medical care to limit the damage of the error. It is based on the Harvard consensus Report 2006 'Responding to adverse events; when things go wrong'. The IEU Alliance Foundation work with with national and international organisations that are actively involved in healthcare and patient safety including the Council of Europe, the European Parliament, the European Commission. "We feel honoured to be a member of the IAPO and hope that our common interests and activities will benefit patients worldwide".

For more information, please see: www.ieu-alliance.eu

LUPUS EUROPE
www.lupus-europe.org

NORTH AMERICA

Easter Seals Inc.
www.easterseals.com

NATIONAL 

ARGENTINA

Argentine Cystic Fibrosis Association

Concieve (CONCEBIR)
CONCEBIR is a non profit organization, created in 1996 to provide emotional support to patients facing fertility issues, and to work towards national legislation which  regulates Assisted Reproduction Techniques in Argentina. The organization organizes patient meetings to provide patients with the latest information about progress in treatment for fertility patients.

For more information, please see:
www.concebir.org.ar

Fibroamerica Association
Fibroamerica is a newly established patient group set up to improve the quality of lives of those with fibromyalgia and chronic fatigue. The group is working to raise public awareness about the condition, to campaign for access to new and improved treatment and to fight against stigma both in the workplace and in everyday life.  Fibroamerica conducts research into new treatments and organizes meetings and events to share information with members. They are also setting up a phone line to offer advice to patients.

AUSTRALIA

ACCESS Australia Infertility Network
Access is a consumer controlled, independent charity, committed to providing whole of life support for women, men and their families who have experienced difficulties conceiving. Access strives to be a national voice to bring the social, psychological and financial concerns of people to governments and the medical and scientific communities.  Patrons are Olympic gold medalist, Glynis Nunn-Cearns OAM and Candice Reed, Australia’s first IVF baby. This organization is represented by IAPO Secretary, Sandra Dill.

For more information about ACCESS Australia Infertility Network, please see: www.access.org.au

Arthritis Foundation of New South Wales
Arthritis NSW represents the interests of those with arthritis and osteoporosis in New South Wales, Australia. The organization’s goal is to educate people with arthritis how to cope with their disease, to provide up to date information to health professionals and to make governments and the community more aware of the needs of people with arthritis and osteoporosis.

For information, please see: www.arthritisnsw.org.au

Health Consumers Association of the A.C.T
www.hcca.org.au

Health Consumers Council Inc (WA)
www.hcc-wa.global.net.au

BANGLADESH

Alzheimer Society of Bangladesh – Associate Member 
Established in 2006, to help people affected by dementia and related disorders. It is working to promote education and training about the condition, and is cooperating with other organizations to implement a national Alzheimer’s government health programme. 

BULGARIA

Association of Patients with Kidney Diseases and Friends (APBZ)
APBZ and friends is a voluntary, non profit organization, established in 2006. Its members are kidney and liver transplant patients, their families, and friends.  It campaigns for improved patient information, and recognition of patient rights in Bulgaria, better medical services and greater access to care.
In addition, APBZ organizes social projects and events to facilitate a network of people in Bulgaria living with these conditions. 
 
For more information, please see: www.apbz.eu

Association 'Women Without Osteoporosis'

Bulgarian Association for Patients' Rights Defense
www.patient.bg

National Movement for Protection of Patients' Rights (Bulgaria)

Center for Protection of Rights in Healthcare - Associate Member
www.czpz.org

CANADA

Arthritis West Island Self Help Group
www.arthritismontreal.ca

Asthma Society of Canada
www.asthma.ca

Best Medicines Coalition
www.bestmedicines.ca

Canadian Arthritis Patient Alliance
www.arthritis.ca/capa

Canadian Association for Porphyria
www.cpf-inc.ca

The Canadian Continence Foundation (TCCF)
TCCF is a national, not-for-profit organization that was formed in 1986 to address the needs of consumers experiencing incontinence. Prior to 1986, there was very little information or support available to the general public. The need is great as it is estimated that there are over 3.3 million Canadians suffering from Urinary Incontinence (UI).

The mission of TCCF is to enhance the quality of life for people experiencing incontinence, by helping them, and/or their caregivers, to seek and access cures and treatment options. To this end, the Foundation implements and encourages public and professional education, support, advocacy and research to advance incontinence treatment and management.

For more information, please see: www.canadiancontinence.ca

Canadian Organization for Rare Disorders (CORD)
CORD is a national network for organizations representing people living with rare disorders in Canada. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. Through a network system, CORD links together individuals and families with the same rare disorder, and provides information on over 6,000 rare disorders.

Millions of affected individuals and their families - as well as support groups, health care and human service professionals rely on CORD's services. The organization works to raise awareness of rare disorders in Canada and has been a leading advocate for the implementation of an orphan drug act.

For more information, please see: www.raredisorders.ca or www.cord.ca/
 
Cancer Advocacy Coalition of Canada (CACC) - Associate Member
Canada's only registered, full time, not-for-profit cancer group dedicated to evaluation of, and advocay around, cancer system performance including patient/survivor family issues. 

For more information, please see: www.canceradvocacy.ca

Consumer Advocare Network (CAN)
The Consumer Advocare Network is a national network of healthcare consumer organizations and individuals in Canada. It provides an effective voice for healthcare consumer organizations, allied groups and individuals to promote informed input to policy and funding decisions which support consumer priorities and encourage consumer participation in healthcare decision making at all levels.

For more information, please see: www.consumeradvocare.org

Infertility Awareness Association of Canada
www.iaac.ca

CHILE

Fibromialgia Corporation, Chile
www.fibromyalgiachile.cl

CHINA

Alliance for Patients' Mutual Help Organizations in Hong Kong (APMHO)
Founded in 1993 with the composition of 37 mutual support groups for patients living with various chronic diseases, APMHO’s has around 40,000 individual members. The objectives of the group are:
 
1. To encourage and escalate the spirit of mutual help; 
2. To promote communication among patients with their families and friends and to support patients as they adjust to living with their illness;
3. Government advocacy to improve care of chronic patients and raise public awareness;
4. To strive for the welfare and legal rights for patients.
 
For more information in chinese, please see: www.apmho.org

Beijing Association of Alzheimer's disease and related Disorders
www.baad.org.cn

Retina Hong Kong
www.retina.org.hk

CROATIA

Association for Prevention, Help & Action Against Viral Hepatitis (ABC Hepatitis - Croatia)
The aim of ABC Hepatitis is to provide a network of support for those suffering from hepatitis and to carry out research into the best treatments available for those living with acute and chronic hepatitis.

It is estimated that as many as 170 million people in the world are HCV infected. In Croatia an estimated 1.3-1.5% of the general population suffer from this condition (50.000-70.000 infected persons).  ABC hepatitis' activities include organizing courses to raise public awareness about hepatitis, working with medical experts and patients to support care, adovocating for the legal rights of hepatitis patients and encouraging more investment into scientific research to develop better understanding of the condition.
 
For more information, please see: www.abchepatitis.hr (no English version currently available).

Croatian Coalition of Associations in Health Care
www.kuz.hr

CYPRUS

Cyprus Association of Parents & Friends of Children with Heart Disease
www.pediheart.org.cy

Pancyprian Heart Patients' Association

Patients' Rights Movement

CZECH REPUBLIC

Czech Association of Patients
www.pacienti.cz

Maternity Hope Foundation
The Maternity Hope Foundation was established in 1995 by involuntary childless women to help people, whose desire for a child remains unfulfilled.  The founder is a pediatrician who suffered from infertility. The aims of the Maternity Hope Foundation work are to work towards patient-centred healthcare, to offer information about the solving of infertility (treatment and adoption) to patients, public and experts, to organize the help and the support to infertility patients and to coordinate the work of the separate organizations dealing with infertility. The Maternity Hope Foundation is a member of the Czech patients´ organizations association, ‘Coalition for Health’ and a member of ICSI.

For more information, please see: www.materska-nadeje.cz

Patient Society Diagnoza CML

 
DENMARK

Danish Cooperation of Patient Organisations
www.pfsdk.dk

EGYPT

Breast Cancer Foundation of Egypt
www.bcfe.org

ESTONIA

Estonian Cancer Society (ECS)
Estonian Cancer Society (ECS) is a non profit organization that was founded in 1992. It has grown into an umbrella organization supporting 15 independent cancer organizations from specialist associations to patient support groups. ECS’s mission focuses both on increasing public awareness about cancer and encouraging healthy lifestyles to promote the prevention and early detection of cancer. ECS also provides practical and emotional support during rehabilitation from cancer.

For more information, please see: www.cancer.ee

FINLAND

Finnish Migraine Association
www.migreeni.org

GAMBIA

African Society for the Enhancement and Learning of People with Disabilities & AIDS (ASELDA) 
ASELDA is a non profit organization, set up in 2004 and based in the Gambia. It provides accommodation for people who are living with disabilities, AIDS/HIV and other chronic conditions. By helping people living with these conditions to gain skills, it enables them to live independently and it fight against stigma and discrimination. The organization also provides health care for members.
 
GEORGIA

Georgian Alliance for Patient Safety (GAPS) - Associate Member
Georgian Alliance for Patient Safety, set up in 2008, aims to improve the quality of health care and the promotion of safe, patient-centred, effective health care for every individual. To improve patient safety, the organization is providing knowledge, skills, and implementing solutions that prevent harm through for example, patient advocacy, infection control. It also provides education programmes for medical students and postgraduate courses for physicians, nurses and managers.

For more information, please see: www.gesafety.org

Georgian Disabled Women's International Association

 
GERMANY

German Pain League
www.schmerzliga.de

German Patients Association
www.dgvp.de

GHANA

Sharecare Ghana
www.sharecare4u.org

GREECE

Magna Mater Hellenic Fertility Association - Associate Member
www.magnamater.gr

Society of Volunteers Against Cancer
www.agaliazo.gr

For Organizational Profiles of members based in countries H-Z, please click here