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 Aniridia Network merchandise
- Set up a Christmas card (etc) selling scheme
- Gather items for an event or nationwide raffle
- Secure sponsorship for our events/publications
- Revise and extend the pamphlet by Aniridia Europe for a lay UK audience
- Design and purchase Aniridia Network banners and pop-up stands and other branded items
- Help to orchestrate activities on Aniridia Day (June) or Rare Disease Day (February)
- Collate a list of doctors experienced with aniridia
- Collate details of major ophthalmology departments
- Collate details of visual impairment societies
- Manage our compliance with the General Data Protection Regulation and PECR
- Produce guidelines for officials responding to enquiries seeking advice
- Research providers to establish a non-geographic phone number and call handling system for Aniridia Network
- Create our child and vulnerable people protection policy and related materials
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 member information pack, particularly for parents new to aniridia
- 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 received.
- 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 Aniridia Network 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
- Put in place the technology for ‘Aniridipedia’ – a free, centralised, public, widely sourced, reliable and persistent online bank of knowledge about aniridia
- 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
Conferences involve a multitude of tasks which build up over a year. Then there are more vital jobs to do at the event itself.
- Publicity to VI organisations
- Marketing of exhibition stalls spaces
- Sponsorship and funding seeking
- Speaker and presentations coordination
- Booking of creche provider
- Venue and catering liaison
- Setup of booking and payment system
- Acknowledging booking and reconciling/chasing payments
- Collation of delegate data for registration, guiding badges, catering, consent, waiver purposes
- Name badge production
- Delegate pack printing and collation
- On the day
- Guides to/from local public transport hub and assistance within the venue for blind delegates
- Exhibition stall wrangler
- Signage and resources (making &) distribution
- Liaison with creche provider and families
- Venue and catering liaison
- Fire marshals
- Registration desk
- Fundraising and raffle stall
- Speaker wrangler
- Master of ceremonies
- Managing audio-visual kit to make recordings
- Taking guide dogs for walk and to spend
- Roving microphone runner
Stuff that just has to be completed and done well regularly and reliably or else Aniridia Network will stagnate or even collapse.
- Support encourage and promote fundraising
- Investigate grant funding and make applications
- Seek sponsorship from companies
- Set up fundraising feats such as skydiving and places on marathons
- Promote online affiliate revenue schemes such as Give As You Live and Amazon Smile/Associates
- Write press releases and handle media relations
- Produce email newsletters
- Turn email newsletters 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 to create a podcast
- Member recruitment – including finding new people with aniridia
- Membership management – gathering and maintaining data about existing members
- 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
- Campaign for better NHS provision for auditory processing disorder
- 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 Aniridia Network 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
All 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 activities.
- develop and implement a strategy for their area of responsibility
- delegate responsibilities when appropriate.