EHS DEVELOPMENT PLAN

DEVELOPMENT PLAN OF THE ESTONIAN HEMOPHILIA SOCIETY 2024-2031

The Estonian Hemophilia Society (EHS) is a non-profit organization that was founded in 1992. The purpose of the society is to support the quality of life of people with bleeding disorders and their families.

Purpose:
EHS's purpose is to ensure that all people with bleeding disorders in Estonia can live as normal and independent a life as possible.

Strategies:

  • To provide information and support to people with bleeding disorders and their families;
  • Stand up for the interests of people with bleeding disorders in front of policy makers and the public sector;
  • To support research and development work on bleeding disorders.

Activities:

  • Continue sharing information about bleeding disorders and raising public awareness;
  • Provide support group and counseling services for people with bleeding disorders and their families;
  • Stand up for the availability of medicines for bleeding disorders and the improvement of services;
  • Support research into bleeding disorders to find new drugs and treatments;
  • Cooperation with EPIKoda, EHC and WFH, Nordic associations;
  • Organize an international conference with the support of EHC.

Metrics:

  • Availability of information on bleeding disorders;
  • Level of public awareness;
  • Satisfaction of people with bleeding disorders with access to information and support services;
  • Access to medicines and services for people with bleeding disorders;
  • Funding for research into bleeding disorders.

Deadlines:

  • Lühikesed tähtajad (1-2 aastat):
    • Jätkata teavitustööd veritsushäiretest ja ühiskonna teadlikkuse tõstmist;
    • Pakkuda tugigruppide ja nõustamise teenuseid veritsushäiretega inimestele ja nende peredele.
  • Pikad tähtajad (3-5 aastat):
    • Seista veritsushäiretele mõeldud ravimite kättesaadavuse ja teenuste parandamise ees;
    • Toetada veritsushäirete uuringuid, et leida uusi ravimeid ja ravimeetodeid.

Resources:

  • Inimressursid:
    • EHÜ vabatahtlikud;
    • Veritsushäiretega inimesed ja nende pered.
  • Rahalised ressursid:
    • EHÜ liikmemaksud;
    • Eraannetused;
    • Sihtotstarbelised toetused;
    • Riiklikud toetused.

Critical success factors:

  • Commitment of EHS volunteers;
  • Participation of people with bleeding disorders and their families;
  • Stable financial resources of EHS.

Risks:

  • Decreased awareness of bleeding disorders;
  • An increase in the number of people with bleeding disorders;
  • Reduction in subsidies.

Correction mechanisms:

  • Awareness campaigns must be continued to raise information and awareness of bleeding disorders;
  • More support services need to be offered to people with bleeding disorders;
  • New sources of funding must be sought to fund research into bleeding disorders.

Additional considerations:
In addition to the above activities and goals, EHS also has the following considerations when preparing its development plan:

  • The need to increase inclusive policies for people with bleeding disorders and their families;
  • The need to provide more personal and digital support for people with bleeding disorders and their families;
  • The need to support bleeding disorder research to find new drugs and treatments to improve the quality of life of people with bleeding disorders.

EHS is committed to supporting its members and their families and improving the quality of life of people with bleeding disorders. The development plan 2024-2031 is a step towards achieving this goal.

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