These recent events organised in Romania by the Asociația Română de Hemofilie (ARH), our Romanian National Member Organisation, between August and September 2024 demonstrate the critical role that education, community support, and advocacy play in improving the lives of people with bleeding disorders.
Whether through leadership trainings, adventure camps, or public awareness initiatives, each effort helps to empower patients to lead healthier, more independent lives. By continuing to prioritise equitable access to medical treatments and support programmes, we can ensure a future where all individuals with bleeding disorders are connected to the resources they need to thrive.
“A Ray of Hope” Camp
18-23 August 2024
This summer, the AHR and the “Together for A Ray of Hope” Association held the 16th edition of the “A Ray of Hope” Camp. Since its founding in 2006 by Adriana Henderson, this camp has provided hundreds of children with haemophilia, along with their caregivers, a place for recreation, learning, and personal growth.
The camp offers a safe, specialised environment where children can participate in educational programmes on self-treatment, creative workshops, and sports like swimming. More than just a retreat, it serves as an empowering space for children to learn how to manage their condition, build social skills, and feel part of a community.
For caregivers, the camp is an equally important opportunity for support and education. By interacting with other caregivers and medical professionals, they develop essential care skills while also finding emotional encouragement and a network of support.
Haemophilia and Leadership School, 2024 Edition
1-6 September 2024
The AHR hosted its annual Haemophilia School, a crucial educational event for people living with haemophilia, their families, and healthcare professionals. This year’s theme “Haemophilia Patient: Connected or Disconnected from the Healthcare System?” focused on the disparities in access to healthcare for haemophilia patients. 147 participants, including adults and children, attended the event, engaging with medical experts, patients, and healthcare representatives to promote better understanding and management of haemophilia.
Notably, the event highlighted the contrast between patients who receive consistent, quality care and those who face life-threatening risks due to systemic healthcare inequities. The need for equal access to treatment and education was a central focus, with discussions on ensuring all haemophilia patients can lead active, healthy lives.
The programme featured several specialised components:
- Medical Education: Helping patients manage their condition with the knowledge and tools needed to prevent complications.
- Community Leadership: Empowering regional leaders to become advocates for haemophilia care at the local level.
- Couples Programme: Addressing the unique challenges that haemophilia can bring to relationships.
- Elderly Programme: Supporting older patients in managing the effects of aging with haemophilia.
- Sports Programme: Encouraging patients to safely participate in physical activities, contributing to a healthy lifestyle.
The event was honoured by the presence of Presidential Advisor, Associate Professor Dr Diana Loreta Păun, who presented the Order for the Promotion of Human Rights and Social Commitment on behalf of the Romanian Presidency, acknowledging the AHR’s efforts in supporting the haemophilia community.
“Row Today in My Place So Tomorrow We Can Row Together” – An Awareness-Raising Event
15 September 2024
The AHR, in partnership with the Ilfov County Council, organised a rowing event on Lake Mogoșoaia to raise awareness about haemophilia. The project aimed to highlight the importance of proper treatment in ensuring that haemophilia patients can lead fulfilling, active lives.
The initiative focused on four key outcomes:
- Public Education: Providing clear and accessible information about haemophilia.
- Raising Awareness: Encouraging empathy and understanding from the general public.
- Access to Treatment: Advocating for better access to life-saving treatments for all patients.
- Fostering Social Inclusion: Creating a supportive environment that helps patients integrate into society.
This unique event not only brought attention to the challenges faced by individuals with haemophilia but also emphasised the crucial role of community support.
HeRo Bears Camp – A Camp Dedicated to Youth with Haemophilia
20-23 September 2024
The HeRo Bears Camp organised by the AHR is an exciting and educational experience designed for young people with haemophilia. This year, participants engaged in a mix of adventure, educational, and recreational activities, building connections with their peers while learning how to better manage their condition.
A broad range of activities included:
- Mountain hikes and paintball sessions encouraged participants to push their boundaries while exploring the great outdoors – fostering adventure.
- Workshops on administering clotting factors in emergency situations and brainstorming sessions on managing haemophilia helped build confidence and life skills – fostering education.
- Campfires and fun games helped to foster strong friendships and provide relaxation in a supportive community – creating entertainment.
The presence of a team from Holland, led by Sebastian, added an international perspective to the camp, sharing valuable insights on haemophilia care and management from The Netherlands.
