Charity No. 1024624
Legal and Administrative Details
For the Year Ended 31 March 2006
Status The
organisation is a registered charity, registered on 5 August 1993
Governing Document The charity is constituted under a
trust deed dated 24 July 1993.
Charity Number 1024624
Registered Office 179 Bakers Ground
Stoke
Gifford
BS34
8GE
Trustees Edna
Knight
Gillian
Manvell
Marie
Layng
Management Committee Carey Hunt
Sarah Trevitt
Eleanor
Fiske
Michael
Patterson
Staff Beverly
Searle Development Director
Marion
Mitchell Family Support Officer
Prisca
Middlemiss Information Officer
Julie
Griffin Finance Officer
Medical Advisor Professor Maj Hulten
Bankers National
Westminster Bank Plc Charities
Aid Foundation
Hanley
St1
1QA
Auditors Godfrey
Wilson Ltd
Chartered
Accountants & Registered Auditors
48
Minchinhampton
Gloucestershire
GL6
9JA
The
trustees are pleased to present their report and audited financial statements
for the year ended 31 March 2006.
Legal
and administrative information set out on page 1 forms part of this
report. The financial statements comply
with current statutory requirements, the memorandum and articles of association
and the Statement of Recommended Practice – Accounting and Reporting by
Charities (issued in March 2005).
Structure, Governance and Management
The
Rare Chromosome Disorder Support Group, known as “Unique”, became a registered
charity on 24 July 1993.
A
board of trustees is responsible for the overall governance of the
charity. Trustees are either named
within the constitution or are elected.
Unique has three trustees and a management committee of seven members
(including trustees) which meets with staff and the charity’s chief medical
advisor at least four times a year to review the group’s work and formulate
strategy. Unique also benefits from the
services of professional medical advisors who liaise with the charity’s
employees.
Unique
employs five members of staff
two full-time and three part-time.
The charity benefits from the donated services of members who use their
professional skills and knowledge to assist the group in areas including ICT,
fundraising, marketing, creative design, copywriting, HR and legal advice as well
as with general administrative support.
The Development Director is responsible to the management committee for
the day to day operations of the charity and implements policies agreed by the
board of trustees. The Finance Officer
assists the Development Director in financial matters.
A
risk register is maintained to identify and monitor implications for the
charity should its main strategic goals not be achieved or operating conditions
change. The register is under review,
with contingency plans to deal with challenges that might arise.
The
response from families and professionals to the work of Unique is logged and
reviewed continuously. Feedback arrives
by letter, telephone, email and via the private members’ forum of the Unique
website or through information submitted for publication in the charity’s
magazine. The introductory pack sent to
new inquirers contains a basic evaluation form and service guide sheets. More detailed evaluation forms are included
with letters sent out by the Assistant Information Officer and in conference
and study day packs. The direction of
future work is influenced by feedback from members.
Company limited by guarantee
At a general meeting of members of the Rare Chromosome Disorder Support Group on 23 April 2005, an extraordinary resolution was passed
accepting the trustees' proposal to transfer the assets, liabilities
and activities of the charity to a newly formed company limited by
guarantee. Unique RCD Ltd, sharing the aims and objectives of the
original charity, was duly incorporated on 23 May 2005 with the
approval of the Charities Commission. Subsequently the
company name was changed to Rare Chromosome Disorder Support Group and
registered in
Objectives
and Activities
Objects
Unique
aims to provide links between families whose children have similar clinical
and/or practical problems caused by rare chromosome disorders. A rare chromosome disorder causing
disabilities and health problems can occur in at least one in every 1,000 live
births. The overall figure for any rare
chromosome disorder (including balanced rearrangements that do not cause
disability and ill health) is at least one in 200 live births.
Unique
aims to raise awareness of rare chromosome disorders, their high incidence and
their significance, both in the
Activities
Unique’s
core charitable activities are categorised under two primary headings:
1.
Family Support Services
Unique
acts as an international support group and aims to provide the following core
services on an ongoing basis:
§
A high-quality
magazine produced three times each year and distributed to members. This publication is the ‘face’ of Unique to
many families.
§
A
comprehensive website at www.rarechromo.org, which attracts the worldwide rare
chromosome disorder community to Unique.
§
A 24-hour helpline service
to support families needing information and to relieve parents and carers in
times of distress and isolation.
§
An annual
conference held in the UK to bring together families and professionals and
share knowledge of advances in diagnosis as well as information helpful in the
daily lives of those affected by a rare chromosome disorder.
To
provide the core support group services, Unique has developed the following
resources:
§ A confidential offline database updated at least once a year, which keeps individual records showing the lifetime effects and consequences of specific rare chromosome disorders on each affected member of Unique. This constitutes a unique resource that is not available anywhere else in the world. The Unique database manager uses the data to respond to requests for information from clinical geneticists, researchers and other professionals as well as from families and people with rare chromosome disorders.
§
The Unique information
project, which builds on our range of published material to support
more families affected by rare chromosome disorders
§
Indirect
family support delivered via professionals
which builds on our existing relationships with professional bodies and
individuals working with families affected by rare chromosome disorders,
including contributions to medical research into the effects and health issues
relating to rare chromosome disorders.
2. Awareness raising
Unique
aims to educate the general public about rare chromosome disorders through
talks and presentations and using national and local media when appropriate.
Achievements
and Performance
1. Family Support
Services
Membership
of Unique continues to grow at
a steady rate, illustrated by the following figures.
|
|
31 March
2004 |
31 March
2005 |
31 March
2006 |
|
Family Members
(cumulative) |
4,000 |
4,500 |
4,920 |
|
New families |
488 |
412 |
400 |
|
Total countries |
64 |
65 |
68 |
Magazine
We publish a highly acclaimed magazine three times a year in
which families and professionals share their knowledge and experiences. The magazine contains information on topics
such as health-related, behavioural and disability issues and how to cope with
them, relevant disability and health legislation, financial and benefits
information and education for children with special needs, as well as a focus
on advances in genetic knowledge and testing and reproduction options. The full-colour magazine is professionally
produced to a high standard. Each issue
costs £10,000 to produce and distribute to members.
A
special edition of the magazine brought information from the October 2005
conference to 4,800 member families worldwide.
Website: www.rarechromo.org
|
|
31 March
2004 |
31 March
2005 |
31 March
2006 |
|
Website ‘hits’ |
87,798 |
119,569 |
170,193 |
|
Messages posted on
members’ forum |
2,000 |
2,352 |
2,876 |
Members
can go to “collect” an electronic version of the magazine from the new magazine
archive held in the password-protected part of the website. So far over 500 member families have chosen
the electronic delivery route, saving the group a considerable sum in postage
and printing costs.
The
Development Director and her husband, an IT consultant, worked throughout the
year to develop the new website, launched in March 2006. Over 50 booklets and flyers about rare
chromosome disorders can be accessed through and downloaded from the
password-protected members’ area with many more to come, along with new areas
for professionals and ‘Friends of Unique’.
Over
200 hours were donated by Trevor Searle to develop the site in addition to the
regular hours he devotes to developing and maintaining the Unique database and
ICT capacity. Mr Searle’s professional
time dedicated this year alone to the charity has been valued at £20,000.
Helpline
|
|
31 March
2004 |
31 March
2005 |
31 March
2006 |
|
Telephone enquiries
(cumulative) |
4,500 |
5,200 |
6,000 |
|
Email enquiries
(cumulative) |
32,146 |
49,560 |
73,200 |
The Development
Director continues to support the 24-hour helpline and acts as the initial
point of contact for all new families.
Conference
The
11th Unique conference took place from 21 to 23 October 2005 at the
Daventry Hotel,
A
conference
report is available to the public on the home page of
www.rarechromo.org – the charity’s website.
Trustees’ summary
The
trustees are delighted by the excellent outcomes of the charity’s Family
Support Services. The Unique magazine
continues to be an excellent production and has evolved significantly from its
beginning as a basic newsletter. The 11th
Unique conference was a highly successful weekend and the feedback from members
proves it to be a worthwhile activity that is valued immensely. Thanks go to the Family Support Officer who
works tirelessly to ensure that each conference is even better than the
last. It is regrettable that
insufficient income prevents Unique from holding the conference annually.
The
trustees recognise that the huge frontline response to families, much of it
bespoke, is generated by a tiny number of highly dedicated staff. Thanks are due to all employees who work hard
to support families by providing prompt information and creating opportunities
for social contact to relieve often profound feelings of isolation. Special mention must be made of the long
hours put in by the Development Director herself to provide an instant response
of the highest quality to every inquiry.
To provide more support to staff performing an invaluable service is at
the heart of trustees’ current concerns over resources.
Maintaining the Unique Database
Unique
maintains a comprehensive offline database detailing lifetime effects of
specific chromosome disorders on individual members, providing an invaluable
source of information for new and existing members and professionals. From the database, staff are able to provide
inquiring professionals with anonymised information about the effects of a
specific rare chromosome disorder. This
is particularly helpful when there is no Unique information leaflet on a
specific condition. Feedback from
professionals, especially geneticists and paediatricians, has demonstrated that
this service has proved invaluable to them in counselling and managing affected
families.
An
anonymised shortened version of the full Unique database is held on the public
website, allowing professionals and families themselves to search through the
specific rare chromosome disorders (with
karyotype where available) of every affected member in the group.
The
database was redesigned in 2005 to accommodate more detailed information about
individual members than before. We
anticipate providing an increasing amount of assistance to research projects in
future, at all times protecting members’ confidentiality.
Information Project
For three years the Information Officer has researched and produced family-friendly, medically verified leaflets and flyers on more than 60 specific chromosome disorders. Most of these are now available to our members via a password-protected area on our website.
Chromosome disorder booklets and flyers available from
Unique to date include:
|
· Pallister Killian syndrome · Mowat Wilson syndrome · Robertsonian translocations · Jacobsen syndrome |
· XYY introduction · XXYY syndrome · XYYY syndrome · XXYY syndrome · XXXXY syndrome · Pentasomy X · Tetrasomy X |
·
Mosaic
trisomy 16 ·
Trisomy 8
Mosaicism ·
Trisomy 9
Mosaicism ·
Uniparental
Disomy 14 ·
Diploidy
triploidy ·
Triploidy ·
Idic 15 |
· Ring 2 · Ring 13 · Ring 14 · Ring 15 · Ring 18 · Ring 20 · Ring 21 · Ring 22 |
·
1q
duplications |