However, without the voices to amplify it is rather unlikely to be heard at all, or say anything that is meaningful. Similarly, the EHC without its NMOs would be without its main purpose. To ensure that the work of the EHC remains relevant for our members, it is crucial that good communication between the EHC and NMOs is maintained and the information reaches those that it is aimed for.

With quite a few changes recently in the EHC staffing, this has also given us the opportunity to review our  communication with our NMOs. In this week’s EHC NOW! we are delighted to bring you updates on membership matters, communication to our NMOs, as well as a some useful reminders about the EHC event calendar!

 

This week’s EHC Now! will provide information on the following items: 

  • Membership Officer
  • Events
  • Travel Grants
  • Activity & Physical Activity Grants
  • Committees
  • Articles from our Members

 

Membership Officer:
It is very important to the EHC to maintain close relationships with our National Member Organisations (NMOs) and for our NMOs to reach out to us for advice, support and information. The role of Membership Officer formerly held by Jo, has now been reassigned to Ms Fiona Brennan and Ms Kristine Jansone. In addition to this, for the past number of years to ensure smooth, efficient and effective exchange with our NMOs, Steering Committee members are assigned as points of contact. To further facilitate this process from January 2020, we have introduced a tandem approach where a Steering Committee member will also be paired with a staff person from the EHC office to support and best serve the interests of our NMOs through regular communication! For information on your NMOs points of contact please consult the table below:


Events: 
Each year the EHC organise many events for our NMOs along with many other communications distributed to our members. With our NMOs also very busy with internal activities, it is important to us that you do not miss deadlines or information regarding our events that may be of interest to you. In the events section of our website you can find the information on what events are currently open for registration, and also information on what the event is about, who is eligible to attend each specific event and the points of contact in the EHC to ensure that any questions you may have about the programmes can be answered! In addition to this, the EHC will now also send a monthly communication to our NMOs highlighting the events currently open for registration or application.

Please click here to view the events section of our website for more details. 

 


Travel Grants: 
The EHC want to make our events as accessible as possible for our members, we therefore cover the full cost of participants to attend certain EHC events. For other events not fully reimbursed by the EHC, we do provide Travel Grants to some of our NMOs. Information specific to each event and the respective point of contact is listed below:

 


Activity Grants:
NMOs have important work to do but don’t always find the funding they need, when they need it. When this occurs, NMOs can apply to the EHC for a small amount of co-funding to:

  • Initiate a required project/programme,
  • Allow an already-initiated project/programme to continue,
  • Any other activity as deemed appropriate by the NMO and the EHC.

Which NMO activities are eligible?
All NMO activities designed to benefit national members, that directly support the improvement of the quality of life of people living with a rare bleeding disorder in their country, are eligible for co-funding. Activities must also be in line with the EHC’s overarching mission and objectives.

Which NMO activities are not eligible?
Activity grants are not long-term solutions and cannot be used for operational costs (e.g. rent, salaries).

How does it work?
NMOs can apply for an activity grant directly with the EHC office all year-round (as the need arises). All applications will be reviewed by the full Steering Committee (SC) and a decision will be made by a majority vote during an SC meeting (three times per year). Preference will be given to NMOs that have not already received an activity grant in the year of application. Grants are provided for a period of one year (12 months) and are awarded on a first-come, first-served basis.

Who is eligible?
Only EHC NMOs can apply for activity grants. Preference will be given to NMOs that:

  • Have limited organisational funding and/or fundraising opportunities
  • Are active members of the EHC (e.g. have regular communication, respond to EHC surveys, etc.)
  • Are legal members of the EHC (e.g. are up-to-date with their membership fee payments)

For more information on Activity Grants you can contact Fiona Brennan.
For more information on Activity Grants please click here.

 


Physical Activity Grants: 
With the Physical Activity Grant (PAG), the EHC wants to support NMOs in organising physiotherapy and physical activities. When an NMOs wants to start up and organise such activity and needs funding for it because of lack of resources, they can apply to the EHC for co-funding to:

  • Initiate a required project/programme,
  • Allow an already-initiated project/programme to continue,
  • Any other physio-activity as deemed appropriate by the NMO and the EHC.

Which NMO activities are eligible?
All NMO activities designed to improve the physical capacity of people living with a rare bleeding disorder in their country, are eligible for co-funding. Activities involving more than one NMO working together are also eligible for funding. All activities must be in line with the EHC’s overarching mission and objectives.

Which NMO activities are not eligible?
PAG’s are not long-term solutions and cannot be used for operational costs (e.g. rent of office, salaries of NMO staff, office materials etc). 

How does it work?
NMOs can apply for a PAG directly with the EHC office all year-round (as the need arises). The full Steering Committee (SC) will review all applications and a decision will be made by a majority vote. Preference will be given to NMOs that have not already received any activity grant in the year of application. Grants are provided for a period of one year (12 months) and are awarded on a first-come, first-served basis.

Who is eligible?
Only EHC NMOs can apply for a PAG. Preference will be given to NMOs that:

  • Have limited organisational funding and/or fundraising opportunities
  • Are active members of the EHC (e.g. have regular communication, respond to EHC surveys, etc.)
  • Are legal members of the EHC (e.g. are up-to-date with their membership fee payments)

For information on Physical Activity Grants you should contact Kristine Jansone.
For more information on Physical Activity Grants please click here.

 


Committees: 
As you will already be aware the work of the EHC is guided by several committees including our Steering Committee, the Medical Advisory Group (MAG) and Medical and Scientific Advisory Group (MASAG) who actively advise and guide the direction of the EHC. Specific committees and working groups are also created to work on behalf of targeted groups in our community such as the Inhibitor Working Group, Women with Bleeding Disorders Committee and the Youth Committee. On occasion, the EHC will announce a call for volunteers to apply to join these or other groups. The call for volunteers will be shared with NMOs, along with the relevant Terms of Reference for the respective committee/working group, eligibility requirements, information on the application process and the closing date for candidatures. These will also be advertised on our website and social media channels.

Currently, the EHC have announced a call for volunteers to join the newly established von Willebrand Disease (VWD) Working Group. For more information on this call for volunteers please click here.

The closing date for candidatures is Friday 14th February at 17.00 CET.
For further information on the call for volunteers to join the von Willebrand Disease Working Group please contact Ms. Fiona Brennan.

 


Articles: 
The EHC are always delighted to hear about the activities and events of our members. We also feel it is important to share these experiences, stories, successes and information with our community. We would like to remind you that throughout the year, we would be delighted to receive articles from our NMOs on your events and activities that share your experiences. At any time of year you can send this onto Laura for distribution. For more information please contact Laura Savini

We hope that this information is helpful for you and will help to facilitate our continued collaboration. In case of further queries or for clarification on any of the above please do not hesitate to contact us!