History of the Rarer Cancers Forum

Identification of need

Two men who had kidney cancer identified the need for the Rarer Cancers Forum (RCF). They realised that people with common cancers had a huge voice with which to influence services, and raise public awareness. Their idea was for all the rare and less common cancers to be gathered under one umbrella, so that people affected by these cancers would also have a voice. It was later decided that a forum should also try to solve the problem of isolation for people with rarer cancers. A postal survey conducted by Macmillan Cancer Relief amongst self-help groups indicated that there would be support for a body such as the RCF.

First meeting and formulation of aims

The first meeting was held on Monday, 01 October 2001 at the Macmillan Cancer Relief Offices in London. The purpose was to identify common issues amongst a disparate group of people affected by a 'rarer' cancer. The meeting was attended by three patients and eight people from cancer charities. The main aims that emerged from this meeting were, in broad terms, the aims we still follow today. These aims are to benefit people with rarer cancers by raising awareness, improving services and reducing isolation.

Charitable status

In 2002 Macmillan Cancer Relief and Cancerlink funded a scoping paper which looked at current provision and future need for people with rarer cancers in the United Kingdom. The Rarer Cancers Forum was generously seed-funded by Macmillan Cancer Relief and successfully applied for charity status in May 2005. The Rarer Cancers Forum now has a co-ordinator and a group of directors and advisors dedicated to changing the situation of people with a rarer cancer.

Patron and advisors

In July 2005 we were honoured when Professor Martin Gore, Head of Oncology at the Royal Marsden Hospital, London, agreed to become our Patron. We were also delighted  when Professor Ian Judson and Dr Frank Saran agreed to be our medical advisors. They both work at the  Royal Marsden NHS Foundation Trust.

First Annual General Meeting and Conference

In October 2006 we held out first AGM and Conference. The audience was made up of patients, families and professionals. The theme of the conference was 'Access to Best Care' and our speakers from the Royal Marsden stimulated a thought-provoking debate on many issues.

Membership of other organisations

During 2006/2007 Rarer Cancers Forum has become a member of a number different organisations:

• Cancer Fifty-two. This is a group of charities concerned with the needs of people with less common and rare cancers. Cancer Fifty-two works to ensure that the Government's Cancer Reform Strategy takes into account the special needs of this group of patients.
• European Cancer Patient Coalition (ECPC). This was launched in 2003 to represent the views of cancer patients in the European health care debate and to provide a forum for European cancer patients to exchange information and share best practice experiences.
• Health Coalition Initiative. This is a network of voluntary health organisations and pharmaceutical companies which models partnership working in the way it is organised.
• Specialised Healthcare Alliance (SHCA). This is a broad coalition of patient groups supported by a smaller number of corporate members. It has been set up to campaign on behalf of people with conditions which require specialised medical care.
• Cancer Campaiging Group (CCG). This is a coalition of national cancer charities dedicated to improving cancer policy and services across the four areas of prevention, care and treatment, patient involvement and choice, and research. Rarer Cancers Forum was elected to the Steering Group in December 2007.
• All Party Parliamentary Group on Cancer (APPGC).  This was founded in 1998 to keep cancer at the top of the political agenda, and to ensure that policy-making remains patient-centred. The APPGC brings together MPs and Peers from across the political spectrum to debate key issues and campaign together to improve cancer services.  Rarer Cancers Forum is a stakeholder organisation.
  

In November 2008, Rarer Cancers Forum became a member of the:

• National Alliance for Rare Diseases (now Rare Disease UK). Rare Disease UK is an alliance of key stakeholders brought together to develop strategic planning for rare diseases in the UK.