Volunteering

We need your help to make Aniridia Network UK more effective, stronger and successful. If you would like to do any of the things here or have any other ideas please contact us to talk about it more.

We have sketched out roles that we’d like people to volunteer for. That said we’re very happy to be flexible about how the responsibilities might be split or shared according to the skills of those who step forward. You may for example like to define a role of your own.  Below are the role descriptions along with a general one that applies to all officials. If these interest you, let’s discuss it more.

Roles

• Trustees - Responsibilities of trustee roles
  • Chair
  • Treasurer
  • Secretary
  • Trustee (up to six)
• Officials
  • Events Officer
  • Fundraising Officer
  • Communications:
    • Content
    • Social Media
    • IT
  • Buddy Scheme
  • Enquiries
  • WAGR/11p Deletion Syndrome Representative

Officials generic role

Officials includes Aniridia Network UK trustees and volunteers. 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.

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
• Education Advisor – special educational needs 
• Welfare system
• Mobility and life skills

Tasks

One off

• Organise a regional meeting (could be an aniridia component to a NBCS family weekend)
• 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
• Recruit a doctor to act as our expert reference and reviewer on medical matter
• Recruit a person to act as our expert reference and reviewer on education matter
• Recruit a person to act as our expert reference and reviewer on welfare system matters
• Recruit a patron
• Host a committee strategy day
• Assist with planning/development (Drupal)/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 symptons.
• Attend Royal College of Opthalmology conference tp educate more doctors about aniridia (and similar events)

Ongoing

• Membership management – particularly renewals and gathering of more data
• Member recruitment – including finding new people with aniridia
• Public Relations – raising awareness in hospitals and/or dealing with the media
• Annual meeting coordinator
• Fundraising coordinator – personal and/or corporate
• Newsletter and blog editor
• Liaison with International WAGR Syndrome Association and families with WAGR
• Improving links with similar organisation such as NBCS, Look, RNIB, Henshaws etc.
• Managing our social media presence
  • Facebook
  • Twitter
  • YouTube
  • Flickr
• Writing minutes of committee meetings
• Liaison with overseas sister aniridia organisations – including European Aniridia Network
• Volunteer recruitment, management and retention
• Support network coordinator
• Monitoring of medical/research news
• Publications designer