Development Plan 2008/2009Objectives The objectives of the Group are to relieve sickness amongst families affected by Niemann-Pick diseases, any distress which may arise therefrom and to advance the education of such families, interested professionals and the general public in all matters concerning the disease, as the Board may determine. To be achieved by: The main means of achieving these objectives are: a) We will provide considered and co-ordinated information and advice on all aspects of Niemann-Pick diseases; by means of the NPDG (UK) Central Office and Clinical Nurse Specialist, newsletters, educational resources, information leaflets, telephone help lines, genetic counselling services and a website. b) We will facilitate the development of family support networks through the provision of Niemann-Pick Clinics, the Family Directory and an Annual Family Conference. We will encourage the further development of the ‘Hope for Hollie’ Campaign parents’ e-forum. c) We will continue to develop and actively promote our Annual Family Conference, to agree a theme and a written draft plan by October each year, taking into account the needs and views of those we aim to support. d) We will continue to develop educational information on Niemann-Pick diseases to support families and health and social care professionals. e) We will monitor and evaluate our Family Support Service; we will seek to develop new/improved ways of providing this service, we will involve our families/members in this process to ensure their needs are recognised. f) We will further develop our fundraising strategy and seek ways to inspire new supporters, whilst retaining more of our existing ones. We will identify potential grant funding opportunities and focus our efforts on creating successful applications. g) We will support the collation of information/data to facilitate research into this group of diseases, by means of the Clinical Research Nurse. h) We will contribute to the development of a registry for Niemann-Pick diseases. i) We will initiate and support an inaugural meeting of International Niemann-Pick disease Groups, in order to explore the formation of a Niemann-Pick Alliance. j) We will actively promote, support and, where appropriate, fund scientific research into the Niemann-Pick diseases. k) We will consider ways of encouraging new initiatives; including the commissioning of further research into the causes and possible treatments of Niemann-Pick diseases. l) We will strengthen and encourage close working relationships with other relevant organisations, in order to facilitate the sharing of information and the effective use of resources. m) Through collaborative working, we will enable the development of a stronger voice with which to influence national policy, stimulate interest in, and further the knowledge and understanding of, this group of diseases. n) We will seek to establish a relationship with those who decide health care policy in the UK. Where appropriate, we will lobby for improvement in the standards and provision of clinical care for those affected by Niemann-Pick diseases. o) We will monitor the access to, and affordability of, treatments and therapies – advocating where necessary and appropriate on behalf of NPD patients. p) We will establish strong links with the pharmaceutical industry, clinicians, researchers and individuals with an interest in Niemann-Pick diseases; to raise awareness and to stimulate the development of possible therapies for this group of diseases. q) We will provide support for the work of the Board of Trustees through the Central Office. We will seek to enhance the knowledge and skills of the Board, through the provision of opportunities for on-going training and development. r) We will develop succession planning strategies and promote the recruitment of new Trustees to ensure the Board has the necessary human resources to pursue and implement the functions of the Group. s) To disburse all funds raised in the furtherance of the Group’s objectives. |
