The European Cancer Patient Coalition (ECPC) has been established to represent the views of cancer patients in the European healthcare debate and to provide a forum for European cancer patients to exchange information and share best practice experiences. It aims to promote the fundamental rights of European cancer patients and to increase cancer patients' influence over European health policy. It aims to ensure timely access to appropriate prevention advice and treatment, and to promote the advancement of cancer research.
The Austrian Selbsthilfe Prostatakrebs (Self-help Prostate Cancer) is a founding member of ECPC, the European Cancer Patient Coalition, and a member of the steering committee of Europa Uomo, the European Prostate Cancer Patient Coalition. The Austrian alliance's slogan is: 'Not knowing creates fear.'
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The European Haemophilia Consortium was founded in 1987 and now has a membership of 43 national member organisations (NMOs) from all over Europe. EHC's continuing goal is to support and empower EHC member organisations so that they can be strong advocates for people with haemophilia in their own countries, and thus secure for them the best possible treatment and care. A Steering Committee consisting of 8 members is responsible for the day-today running of the EHC, which has its headquarters in London.
The EHC holds an annual conference, with major themes including current trends and developments in the treatment of haemophilia, the safety and supply of haemophilia products, and regulatory affairs. The EHC also operates as the European regional office of the World Federation of Haemophilia (WFH), working closely with the WFH team in Canada. A WFH representative regularly joins EHC meetings.
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The European Organisation for Rare Diseases (Eurordis) was created in 1997 by a number of French groups - Muscular Dystrophy Association (AFM), the French Cystic Fibrosis Association (Vaincre la Mucoviscidose), the National League (LNCC) and the AIDS/HIV Federation (AIDES Federation Nationale), following the model of the North American National Organisation for Rare Disorders (NORD). Eurordis brings together more than 280 rare disease associations from 33 countires, 22 of which are European Union Member States. As a representative of rare disease patient organisations, Eurordis has been a driving force in advocating for the adoption of the European Regulation on Orphan Drugs. Thanks to its active membership, public affairs advocacy and ongoing programmes, Eurordis has emerged as the leading coalition and the voice of people living with rare diseases.
At present, Eurordis brings together more than 200 rare disease associations in 16 different countries, 13 of which are European Union member states. Ten National Alliances of Rare Disease Organisations are also members of Eurordis. Eurordis thereby represents millions of patients affected by more than 1000 rare diseases. Eurordis is a non-governmental organisation, supported by its members and by the AFM, the European Commission and by private partners.
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In 2000, the Hepatitis Aid Austria - Healthy Liver Forum was founded by patients as a national nonprofit organisation. The main objective of this selfhelp group is to support patients suffering from all different liver disorders in daily life. It also provides an independent and non-political forum for patients, interested people, medical and paramedical staff, as well as industry, to discuss challenges and future strategies.
In addition, the group is networking nationally and with international organisations to strengthen the position of patients in general. It also initiates training courses for medical staff as well as the public to increase awareness of patients' needs.
The International Myeloma Foundation (UK) supports and informs people affected by myeloma and aims to improve treatment and care through education and research. Founded in 1997, IMF (UK) is the only organisation in the UK dedicated entirely to myeloma.
A range of programmes and services can be accessed via IMF (UK), including a free phone helpline, support groups, patient and family seminars, information via its website, an information pack and a bi-monthly newsletter. IMF (UK) also works closely with doctors in drawing up guidelines on the treatment of myeloma. IMF (UK) has a membership in excess of 7,000 people nationwide, made up of patients, family and carers, supporters, volunteers and healthcare professionals.
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The Sickle Cell Society (UK) was founded in Great Britain and registered as a charity in 1979, and is now the premier medical NGO for black and minority ethnic community in the UK. It was formed by a group of patients, parents and health professionals, concerned about the lack of understanding and the inadequacy of treatment for sufferers of sickle cell disorders. Today it facilitates a nationwide umbrella of over 30 patient support groups, run from its headquarters in London, providing information, counselling and direct support services and assisting research, as well as advocating locally, nationwide and internationally in the interest of those affected by sickle cell disorder. The Society is managed by a Committee of 12 volunteers, elected at the Annual General Meeting, which meets each month. The Management Committee is accountable to the membership and works with a small core of paid staff to further the Society's aims by providing special services and welfare schemes for sickle cell sufferers. The Society's vision is to be the most successful sickle cell organisation nationally, with a wide network of well-informed, committed and active supporters working at local, national and international levels, in order to be better able to empower and assist people with sickle cell disorders to achieve their full economic and social potential.
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Thalassaemia International Federation was established in 1987 to promote awareness and policies of effective prevention and appropriate clinical care of thalassaemia major accross the world.
TIF is an umbrella organisation involving 98 National Thalassaemia Associations (NTA's) and other members, including scientists and pharmaceutical companies from 60 countries accross the world. TIF maintains close relations with medical centres, scientists, equipment suppliers and research centres throughout the world. The Federation has its central office in Nicosia, Cyprus, from where all activities and functions of the Federation are coordinated.
TIF's educational programme stands out amongst the pivotal activities of the Federation, providing training to the public, patients, parents and health professionals on a regular basis, as well as publishing, translating and distributing free educational material to members around the world. Recognising TIF's work and contribution to the control of Thalassaemia and other severe haemoglobinopathies has been accepted to work in "official relations" with the World Health Organisation (WHO) since 1996.
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SFK was founded in 1994 by Candy Heberlein, former SFK president, whose family lost three young members to cancer of the bone marrow.
The SFK board consists of seven members: a jurist, two businessmen, three specialists in haematology, oncology and paediatrics, and the SFK president. All board members participate on an unpaid basis.
The Foundation has no employees and receives no financial support from the state of Switzerland, but it is exempted from all taxes.
One main objective of the organisation is to alert the public to the needs of patients living with cancer. In order to support patients, and to fill the gap in information, the president has personally founded and oversees seven patient-groups: SOSLeukaemia & Myeloma - across the country.
Patients with cancer of the blood or bone marrow may be in need of blood transfusions, and thus the issue of SAFE BLOOD is key to the Foundation and its members.