The HAEi YC was formed to support, motivate and educate the younger generation of HAE patients as well as their families and friends. Formed under HAEi, the Community follows the HAEi YC content Guidelines for co-operation, co-ordination and information sharing:

• Be inclusive
• Be respectful
• Make it comfortable for everyone
• No idea is a bad idea

The HAEi YC is free to join, and open to HAE patients, family members, caregivers and friends who are:

1. Already part of their country’s HAE member organization
2. Aged between 12-25

>> Membership is free and sought through the HAEi YC’s webpage under the ‘Join us!’ section.

Members (or their parents, if below 16 years of age) will be asked to complete a membership registration form and these details will be held safely and securely on HAEi Connect. Data/information provided to the HAEi YC as part of community membership or involvement in specific Groups will be kept on file and used for HAEi YC purposes only.

Members of the Community who turn 25, will be contacted to advise that they have just entered their last year as an eligible member of the Community.

The mission of the HAEi YC is for members to be able to work together for a better quality of life for HAE patients. This is achieved through sharing experiences, advocating for better care, and welcoming new youngsters into the global HAE family!

The goal of the community is to create a welcoming, caring and inclusive environment for all members. The HAEi YC aims to support all of its members from around the world and work together to advocate for better care and quality of life for the future of HAE patients.

The structure of the HAEi YC consists of two different Groups. A Youngsters Advisory Group and Youngsters Community members. The Advisory Group is made up of maximum 10 community members who volunteer to be a part of the Advisory Group. Where the Advisory Group agree and decide to progress with a project, a Work Group will be agreed. The Work Group can be made up of members of the Advisory Group and the Community and will be responsible for delivering that project.

Advisory Group key responsibilities:

• Oversee the direction and longer-term objectives of the HAEi YC
• With HAEi (Nevena Tsutsumanova), discuss and agree projects for the HAEi YC
• Establish Work Groups for agreed projects
• Follow up on tasks in Work Groups, providing support where possible
• Act as the contact point between the HAEi YC and HAEi; hold meetings and/or calls with HAEi as required
• Promoting the work of the Youngsters Community to expand membership and ensure the community remains inclusive and welcoming
• Schedule and organizing meetings/calls with different work groups as needed

Work Group key responsibilities:

• Agree project tasks, timelines and who will undertake the tasks to deliver the project
• Working on the tasks within agreed timelines
• Scheduling and organizing meetings/calls with Nevena as needed
• Keep Advisory Group members updated on project progress, seeking support where needed

HAEi is responsible for providing support and guidance for the HAEi YC. This will be provided by the HAEi operations and executive teams and includes the final approval of projects and resolution of any disagreements within the HAE YC organization. Specific support such as design or web, will be provided where needed and can be sought by contacting the HAEi team.

All email communications to the HAEi YC will be handled by Nevena on behalf of HAEi. Nevena will act as a point of contact for anyone who requires more information about the Youngsters Community. Nevena can be contacted via the dedicated email address; youngsters@haei.org and will forward on any communications to relevant individuals.

Any member of the HAEi Youngsters Community (see section 2) is eligible to be a part of the Advisory Group or a Work Group

Community members who want to be involved should email youngsters@haei.org to express their interest. It would be really helpful to know:

1. Whether they wish to join the Advisory Group or be in a Work Group
2. Any specific areas of interest
3. Any experience of being involved in projects in the past
4. The time they have available to be involved

All applications will be reviewed by Nevena on behalf of HAEi in the first instance. If there is no capacity for an additional member in the requested Group, an alternative will be suggested wherever possible. Where there is capacity, the new Advisory Group/ Work Group member will be asked to join a small, informal, and friendly Zoom chat to meet with current Group members and Nevena. During this call, specific roles and responsibilities of new members can be agreed upon.

The community is always open to new and exciting ideas for projects and any community member can propose a new idea or project. Any suggestions should be submitted via youngsters@haei.org or the website/social media channels and will be considered by the Advisory Group and Nevena (on behalf of HAEi).

To ensure the community can continue to grow and achieve its goals, all members of the Advisory Group and Work Groups understand that a time commitment is required.

Advisory Group members;

• The time commitment will vary. At busy times, Advisory Group members will be expected to commit around 5-8 hours per month to the work of the community; this includes participation on Advisory Group calls.
• All Advisory Group members will be expected to join the monthly calls with Nevena from HAEi, to discuss current projects and plan future activities.
• HAEi YC expects that Advisory Group members will be involved for a minimum of 1 year, unless specific circumstances prevent this.
• The participation of all Advisory Group members will be reviewed every year, providing the opportunity for Group members and HAEi to reassess their availability and role moving forwards.

Work Group members

• It is anticipated that the time commitment from members of Work Groups will vary. At busy times we would expect members to commit around 5-8 hours per month for the duration of the project.

We understand that schedules can change, and life can become busy. If at any point you feel you no longer have time to commit to group membership, please just let us know. To help projects continue we simply ask you to send an email to Nevena preferably at least 2 weeks in advance of when you want to take a break or leave a Group.

HAEi YC will also keep a check on participation of Group members. Where a Group member has been unable to participate or contribute over a period of time, for example not able to join 3 monthly calls and without providing a reason or responding to contact from Nevena or Advisory Group member(s), HAEi YC reserves the right to put that member on a break from the Advisory or Work Group. HAEi YC will then seek alternate members of the community, who have the availability to participate, to join the Group.

Members who leave Groups, or are on a break, remain part of the HAEi YC and are welcome to re-apply for specific Group involvement at any time.