Our membership
The EHC represents 48 National Member Organisations (NMOs) located in the World Health Organisation (WHO) European region, including 27 Member States of the European Union and most Member States of the Council of Europe.
Stronger together
The EHC’s members vary significantly in population, access to treatment and care, and socioeconomic status. Such diversity is reflected in the levels of treatment and care experienced by our members. We become more effective by sharing our experiences, knowledge and ideas, and working together.
Our organisation is open to all European NMOs based in the European region defined by the WHO Europe. We only accept one patient organisation per country to strengthen national advocacy efforts.
EHC Membership Directory
Portugal
Associação Portuguesa de Hemofilia e de outras Coagulopatias Congénitas (APH)
Support and empower NMOs
The EHC aims to ensure that its NMOs become and remain effective patient organisations at national and European levels, by providing them with a wide range of support services.
For the EHC NMOs
Since 2015, the EHC has organised annual EHC Leadership Conferences to bring multiple generations of patient leaders and staff members together for an annual exchange of experiences, best practices, and shared positions on common issues and challenges facing the European community.
EHC contact points
The EHC works hard to maintain contact with all of its NMOs throughout the year to monitor significant developments in access to treatment and care in their countries. The EHC encourages every NMO to reach out to EHC Staff and Steering Committee members to seek for assistance, share information and achievements, and collaborate to improve quality of life for patients with bleeding disorders and their families.
Data collection
The EHC annually collects data from its members on a particular aspect of patients’ access to treatment and care in Europe and publishes the results widely, including in peer-reviewed scientific journals, EHC monographs, and other communication tools for use by its members and other stakeholders at national and European levels.
Capacity building
The EHC provides targeted and in-depth training to its NMOs based on their changing organisational needs, economic climates, and political environments. Currently, the EHC is running three series of multi-annual workshops on:
– Economics and Health Technology Assessments (HTA)
– Youth Leadership
– New Technologies
State-of-the-art information
The EHC disseminates to its NMOs and other stakeholders the latest scientific and medical developments in the field of congenital bleeding disorders through diverse formats, including events, projects, and social media.
Support at the national level
The EHC supports its members at national levels when needed and, in the function of the issues, works closely together with other stakeholders including the World Federation of Hemophilia (WFH) and the European Association for Haemophilia and Allied Disorders (EAHAD) to ensure maximum impact.
Supporting NMOs in situations of crisis
The EHC provides support to its members in the situations of humanitarian crises or armed conflicts. From establishing communication lines and distributing information to setting up special short-term funds.
EHC Grants
The EHC NMOs have important work to do but don’t always find the funding they need when they need it.
There are currently two types of grants available at the EHC: Activity Grants (AGs) and Physical Activity Grants (PAGs).
When this occurs, NMOs can apply to the EHC for co-funding* to:
- Initiate a required project/programme;
- Allow an already-initiated project/programme to continue;
- Sustain any other activity as deemed appropriate by the NMO and the EHC.
* Activities must have at least one other source of co-funding (e.g. NMO’s own budget, external funding sources, etc.). Activities cannot be funded solely by the EHC.
Who is eligible?
For the Activity Grants:
Any EHC NMO can apply.
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 the Physical Activity Grants:
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.
What NMO activities are eligible?
For the Activity Grants:
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 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.
For the Physical Activity Grants:
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.
What NMO activities are not eligible?
For the Activity Grants:
Activity grants are not long-term solutions and cannot be used for operational costs (e.g., rent, salaries, etc.).
For the Physical Activity Grants:
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.).
What is the range of funding?
For the Activity Grants:
In the EHC budget there is a funding pool from which to provide small activity grants to NMOs. While there is no minimum or maximum amount per individual application, NMOs are asked to apply for only what they need in order to ensure that the EHC can provide maximum support to all of its members. The Steering Committee reserves the right to make a final decision on the amount granted.
For the Physical Activity Grants:
In the EHC budget there is a funding pool from which to provide small PAG’s to NMOs. While there is no minimum or maximum amount per individual application, NMOs are asked to apply for only what they need in order to ensure that the EHC can provide maximum support to all of its members. The SC reserves the right to make a final decision on the amount granted.
What do grant recipients commit to?
For the Activity Grants:
After the grant has been received and used, NMOs commit to sending the EHC office a final budget and article for the EHC newsletter up to three months after completion of the activity.
For the Physical Activity Grants:
After the PAG has been received and used, NMOs commit to sending the EHC office a final budget and article for the EHC newsletter up to three months after completion of the activity.
How to apply?
For the Activity Grants:
NMOs can apply for an activity grant directly with the EHC office all year round (as the need arises). The EHC Steering Committee 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 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.
For information about the application process, please write to [email protected].
Here you can view and download the Activity Grant guidelines and application form in English and Russian.
For the Physical Activity Grants:
NMOs can apply for a PAG directly with the EHC office all year-round (as the need arises). The EHC Steering Committee 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.
For information about the application process, please write to [email protected]
Here you can view and download the PAG guidelines and application form in English and Russian.
EHC NMO Organisational Health Programme
The Organisational Health Programme (OHP) is a programme approved by the EHC NMOs and embedded into the work of the EHC as an opportunity for reflection and growth for NMOs.
The EHC will support NMOs to promote best practices such as democratic and inclusive structures, financial transparencies, and sustainable and formal relationships with stakeholders.
Stay up-to-date with the latest EHC activities and events!