EU Elections 2024: Call to Action

With the EU Elections 2024 less than a week away, the European Association for Haemophilia and Allied Disorders (EAHAD) calls upon the policy makers to become champions of haemophilia and rare bleeding disorders healthcare like never before.

Our mission, dedicated to enhancing clinical care, fostering education, and advancing research, needs your support.

Here’s how you can make a difference:

Ensure Accessible Care and access to patient health data

In a world full of uncertainties, we urge you to prioritize treatments for individuals with haemophilia and rare bleeding disorders. Let’s guarantee access to essential care, whether nationally or across borders.  We urge you to support the development of the European Health Data Space to assure access to individual’s health data for patients and treaters and to underpin research, innovation, policy and regulations through secondary use of health data.

Empower physicians and patients

We call upon you to invest in multidisciplinary comprehensive care for individuals with haemophilia and rare bleeding disorders, ensuring access to specialist medical treatment, nursing, physiotherapy, and psychosocial support which is proven to deliver best outcomes. Let’s aim for all European citizens with haemophilia and rare bleeding disorders to have access to an accredited European Comprehensive Care Centre.

Make rare and very rare diseases a Priority

Let’s put rare diseases higher on the public health agenda. We urge you to strengthen regulatory frameworks to foster innovation and develop groundbreaking therapies. Together, we can make the lives of those with rare diseases better and ensure more equitable access to novel treatments.

Push Research and Innovation forward

Let’s make Europe the place where cutting edge research and development flourishes. Let’s support initiatives like research grants, foster collaborations and advance scientific initiatives to enhance patient care and contribute to the European competitiveness

Embrace appropriate Health Technology Assessment for rare disorders

Through EU regulations on Health Technology Assessment (HTA) including the implementation of Joint Clinical Assessment in 2025, we hope to see the optimisation of resource allocation and quality enhancement of healthcare but ask that appropriate methodologies are used for rare disorders with low numbers of affected individuals.

Support Gene Therapy

Let’s continue to leverage the life-changing potential of gene therapy for people living with severe inherited diseases including haemophilia. Maximising the potential of these advanced therapies requires European countries to assure equitable access to excellent gene therapy centers, including across borders. People with haemophilia and treating clinicians support the use of existing networks of specialist haemophilia treatment centres so that together, we can pave the way for affordable, transformative treatment options.

We believe that your commitment to these critical areas can shape the EU’s health landscape for years to come and make a real difference in the lives of EU citizens living with bleeding disorders across the continent.

Together, let’s build a healthier European haemophilia and rare bleeding disorders community!