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, what you enjoy doing or would like to learn. How can they enable our charity to help more people more effectively?
Below are some of the things that need to be done but won’t happen without your involvement. We have also defined some sample roles and generic responsibilities. If you would like to help lead and manage the charity find out about being a trustee. If you would like to do any of the things here or have any other ideas please contact us to talk about it more.
How to help
Things that anyone can do but will be really useful.
- Organise a meet-up (could be an aniridia component to a Bind Children UK /VICTA event)
- 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
- Provide/Find a venue for an officials strategy day
- Take photos at our events
- Record (and edit etc) audio/video of our events
Tasks requiring a bit more time, effort or expertise which will help us take a good step forward.
- Compile an ideas pack and resources kit for fundraisers
- Research providers and hence setup an online shop for ANUK merchanise
- Set up a ANUK Christmas card (etc) selling scheme
- Revise and extend the Aniridia Europe pamphlet for a lay UK audience
- Design and purchase ANUK banners and pop-up stands
- Orchestrate an aniridia awareness day
- Orchestrate an online awareness/fundraising meme
- Collate a list of doctors experienced with aniridia
- Collate details of major ophthalmology departments
- Collate details of visual impairment societies
- Review our compliance with the Data Protection Act and manage registration with the Information Commissioner
- Establish professional liability cover for our officials, advisers and panellists
- Produce guidelines for responding to enquiries seeking advice
- Research providers to establish a non-geographic phone number and call handling system for ANUK
- Write our child and vulnerable people protection policy
Services and initiatives
- Compile text for an online aniridia FAQ
- Produce profiles of people with aniridia so others can read their stories
- Compile a “new parent’s information” pack
- Produce a “hospital passport” for patients with aniridia
- Establish a capability and CPD assessment system for our advisers and panellists
- Conduct an online survey of aniridics symptoms, needs, assistance received and treatments receved.
- Research iris hypoplasia and the extent to which we should cater and reach out to families with it.
- Compile information about melatonin for an ‘Evidence Summary for Unlicensed or Off-label Medicine’
Really rewarding work requiring a significant investment of time and effort or expertise or coordination of/with other people. Completing these would be a massive boost and unlock lots of potential too.
- Help with organising an ANUK or Aniridia Europe Conference
- Take the Expert Training Course for Patients and Patient Representatives run by EUPATI.
- Assist with planning/development and design of our next website
- Technical development of our Salesforce membership database
- Enable member self-service maintenance of details
- Create geographical display of members locations
- Addition of new fields and queries for reports
Stuff that just has to be completed and done well regularly and reliably or else ANUK will stagnate or even collapse.
- Support encourage and promote fundraising
- Research grant funding and make applications
- Set up fundraising feats such as skydiving and places on marathons
- Promote online affiliate revenue schemes such as Give As You Live and Amazon Associates
- Write press releases and handle media relations
- Set up and grow an online aniridia community on Rare Connect
- Produce email newsletters
- Turn email newsletter into paper mailings for postal members
- Coordinate information leaflet distribution
- Public Relations – raising awareness and improving links with hospitals, ECLOs, MACS, Blind Children UK, Nystagmus Network, Contact A Family, Look, RNIB, Henshaws etc. and sister aniridia organisations/
- Manage and raise engagement on our social media channels
- Record blog posts etc on to Audio Boom
- Member recruitment – including finding new people with aniridia
- Membership management – gathering of more data about existing memers
- Recruiting, managing and retaining volunteers
- Train volunteers (including those who use screen-readers) to use our IT systems such as Freedcamp and Salesforce
- Manage our finances
- Minute taking
- Compiling our annual report
- Manage a 360 appraisal system for officials
Services and initiatives
- Lead a campaign for early diagnosis
- Manage a youth mentoring scheme
- Monitoring and reporting on medical/research news
- Deal with enquiries
- Managing and activating the advisers and medical panel
- Running the befriending scheme
- Represent ANUK on the Board of Aniridia Europe
Specialist tasks for medical professionals
- Develop our published information on aniridia and related conditions
- Attend (and present) Royal College of Ophthalmology conference (and similar events) to educate doctors about aniridia
- Run a clinic at our conference
- Organise a seminar about aniridia for clinicians.
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 don’t have to take on a whole role. You may even like to define a role of your own.
- Conference Officer
- Fundraising Officer
- Communications officer(s):
- Befriending Scheme Officer
- Volunteering Officer
- Enquiries Officer
- Aniridia Europe Liaison Officer
Officials generic role
A volunteers, advisers and trustees 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.