To provide the services provided by Aniridia Network UK takes time and effort of cur amazing current volunteers. We need your help to ensure they continue.
Every bit of assistance, no matter how small is hugely helpful to us and your fellow members.
- Volunteering is enjoyable, rewarding and improves your skills.
- You can achieve great things in as little time as you can spare.
- Your location is not important – we do everything online or by phone.
Think about your abilities and what you enjoy doing. How can they make our charity help more people more effectively?
Below are roles we’d like people to volunteer for. But we’re flexible about how the responsibilities might be split or shared according to the skills of those who step forward. You may even like to define a role of your own. You don’t have to take on a whole role though. Dealing with any issue is a great step forward that would not otherwise happen. There are lots of one-off tasks that need doing.
If you would like to do any of the things here or have any other ideas please contact us to talk about it more.
Roles
Officials
- Conference Officer
- Fundraising Officer
- Communications officer(s):
- Befriending Scheme Officer
- Volunteering Officer
- Enquiries Officer
- Aniridia Europe Liaison Officer
Trustees
Trustees have ultimate, collective responsibility for directing the affairs of ANUK, ensuring that it is: solvent, well-run, and delivering its charitable outcomes for the benefit of the public for which it was set up. This is a legal responsibility and there is good practice to be followed. Read our Trustee role description and for more details read the Charity Commission guidance on the responsibilities of trustees Read profiles of the current trustees.
There can be between 3 and 9 but usually about seven people on our trustee board.. There are three roles which have additional duties:
Advisers
We need people to refer questions to and give us a definitive answers we can use in our communications. these fall into the following categories.
- Medical Adviser
- Education Advisor
- Disability Rights Adviser
- Mobility and life skills
Officials generic role
Officials includes Aniridia Network UK trustees, volunteers and advisers. All Officials are expected to:
- act as a representative of and promote the interests of the charity and its members.
- build and maintain good, productive and professional working relationships with:
- other officials
- members of the charity and
- other organisations and individuals.
- promote and uphold the charity’s strong commitment to its principles.
- uphold the substance and spirit of the charity’s constitution.
- attend and actively participate in committees as outlined in the constitution or relevant to the post
- organise any committees or working parties as outlined in the constitution or relevant to the post, and take on the responsibilities of a chair for them.
- handle charity internal communication in a timely and responsible manner.
- make contributions regarding their post to charity external communications and events.
- adhere to charity policies and sign any agreements required, such as confidentiality and data protection.
- attend relevant training courses.
- contribute to charity reports and planning
- give a full and effective handover to their successor.
- help increase the charity’s membership, funding and volunteers
- collect suggestions and feedback relating to their role. Respond to and learn from this to improve future activity.
- develop and implement a strategy for their area of responsiblity
- delegate responsibilities when appropriate.
Tasks
One off
- Organise a meet-up (could be an aniridia component to a NBCS family weekend or Nytagmus Netowrk meeting)
- Write a blog post
- Interview someone for an article/podcast/video
- Write an article on a subject (including research where necessary) for our resource bank to help others in future
- Research grant funding
- Compile text for an online FAQ
- Host a committee strategy day
- Assist with planning/development and design of our next website
- Record (and edit etc) audio/video of our events
- Take photos at our events
- Collate a list of doctors experienced with aniridia
- Anonymise Harry’s ‘pupil passport’ to make a template for others to use
- Research iris hypoplasia and the extent to which we should cater and reach out to families with it.
- Compile a “new parent’s information” pack
- Conduct online survey of symptoms, needs and assistance received
- Lead the early diagnosis campaign
- Organise a petition of patients, families and doctors to get the RNIB to correct their aniridia factsheet
- Create photo ‘demonstrations’ of aniridia symptoms.
- Attend Royal College of Opthalmology conference (and similar events) to educate more doctors about aniridia
Ongoing
- Member recruitment – including finding new people with aniridia
- Membership management – gathering of more data about existing memers
- Public Relations – raising awareness in hospitals and/or dealing with the media
- Improving links with similar organisation such as NBCS, Look, RNIB, Henshaws etc.
- Liaison with overseas sister aniridia organisations – including European Aniridia Network
- Monitoring of medical/research news
- Publications designer
