article

The community wins together – essential aspects of hemophilia in Romania and Europe

The community wins together – Essential aspects about hemophilia in Romania and Europe was the title of the online debate organized by the Romanian Hemophilia Association on the occasion of Europe Day. 

Every year, on Europe Day (May 9), we celebrate peace and unity in Europe. Many European countries enjoy optimal medical care for people with hemophilia, but unfortunately there are still significant gaps, as in the case of Romania. Although we have reached a factor level of just over 3 IU / capita, which is a success for all of us, we can not yet speak of a unitary healthcare provided throughout the country and health policies need to be improved. 

We had the opportunity and the opportuneness for an online dialogue, both with the institutional environment such as the European Parliament represented by Mr. Cristian Bușoi , the European Hemophilia Consortium in the person of Mr. Declan Noone as president, representatives of other hemophilia associations from Europe and with the academic environment and expertise on the field of hemophilia in the person of Prof. Dr. Margit Șerban.

We aimed for this meeting to provide us with an important landmark of collaboration between important actors in the field of health policies on hemophilia and highlighting examples of good practice that can be transposed in our country such as: The importance of the National Register for People with Hemophilia; Home treatment, its provision and the patient’s circuit from home to prescription; The doctor-patient collaboration, underlines Daniel Andrei, the president of the Romanian Hemophilia Association.

But they cannot be declarative or only partial, they must be translated into modern, increasingly effective policies and mechanisms of the authorities and the association that serve the interests of patients with hemophilia and other bleeding disorders so as to respond to current difficulties and future challenges. 

The Romanian Hemophilia Association, the only organization in Romania that is a member of the European Consortium and the International Hemophilia Federation, is constantly working with these organizations to create new premises for obtaining results such as countries that already have an advanced hemophilia program.

Since 1992, the Romanian Hemophilia Association has sought to continuously reform health policies regarding hemophilia and to find solutions for the medical care of members of our community. With the integration of the member of the European Hemophilia Consortium for the voluntary pooling of human resources, a mechanism has been created for a better quality of life for members of the community of people with hemophilia in our country. But they cannot be declarative and only partial, they must be translated into modern, increasingly effective policies and mechanisms of the authorities and the association that serve the interest of patients with hemophilia so as to respond to current and future difficulties, says Prof. Margit Serban. 

Today, the European Parliament has a significant and serious agenda regarding the health of European citizens and the mobilization is very large through the substantial sums granted to the different health programs. Investments are made in health, funds are provided for patients and hospitals and these were obtained through excellent collaboration with Stella Kyriakidou, European Commissioner for Health and Food Safety since 2019. Particular attention is paid to stocks and pharmaceutical strategy, said MEP Cristian Busoi. 

The President of the European Hemophilia Consortium, Declan Noone, underlined the strategic importance of organizing integrated centers dedicated to hemophilia, the need for the availability of new treatments, the importance of home treatment and the need for applicability throughout the country. He also noted the successful collaboration of the organization he leads with the Romanian Hemophilia Association and relevant to the projects carried out at the level of the community of people with hemophilia in our country. 

In Ireland, the percentage of people with haemophilia following prophylaxis has reached 95%, says Brian O’Mahony, Executive Director of the Irish Haemophilia Association. It continued by offering solid arguments in favor of the development of the Patient Register, the organization of the national tender for the purchase of drugs for hemophilia and the important role of a patient association both to increase the quality of care in the community of those with hemophilia and in this pandemic period. Brian O’Mahony also issued a warning about the challenges that may arise as a result of the global economic situation and the call to continue in a proactive manner with responsibility and commitment to finding solutions for people with hemophilia. not to suffer in the midst and after this global pandemic. 

Miguel Crato, member of the executive committee of CEH and representative of the Hemophilia Association of Portugal reiterated the essential aspects of the association in collaboration with institutional decision makers both for the implementation of a patient registry and for auctions organized for the purchase of drugs. He underlined the important role that the European Hemophilia Consortium has in providing support, expertise, facilitation of good practices and concrete actions in increasing the quality of life and medical care provided to people with hemophilia. 

Dejan Petrovoc, president of the Hemophilia Association of Serbia, presented in an open, sincere and clear way the example of the patient register in his country and the not very easy path of its creation, which led to a punctual analysis of the hemophilia situation in the country. and the transition, through the existing treatment centers, to the treatment provided at home, through one or two complex monitoring visits that take place annually for consultation and further prescription of personalized treatment. 

Radu Gănescu, vice-president of the European Patient Forum and president of COPAC, was with us at this meeting. Radu, a friend of our community and colleague of suffering, presented the current situation through which a chronic patient transits and the importance of the collaboration of all actors for a better quality of life for each patient. 

Whereas it has been 70 years since the Schuman Declaration, which initiated the European construction process and 30 years since the establishment of the European Hemophilia Consortium, a European organization with constant support and involvement in these years for the development of healthcare for hemophilia patients in Romania. , we want to bring again concrete results in the modern treatment we need. 

READ MORE
event

World Hemophilia Day

On April 17, every year, starting in 2004, when this day was organized for the first time by Adriana Henderson and Laurie Kelley from the United States of America, we organize, in our country, events dedicated to hemophilia, together with doctors, decision makers and supporters. We mark this day in order to increase the degree of information and awareness of the population on this condition. Although we are seen as ill, we do not think that our suffering is seen as great. Many of us are getting harder and harder. We pass each other and it is not sufficiently known what difficult situations our parents are going through. We are people who strive to have a normal life but the system has not helped us much. We know that worldwide, 420,000 people have haemophilia. 94% of people with haemophilia are supported by family members or partners, indicating the degree of dependence of the disease. 41% of parents of patients with haemophilia reported negative experiences when they told others about their sick children. On this occasion, we publicly thank the parents of the patients with haemophilia for the dedication and love they are fighting for their children every day and we consider them some heroes.
Hemophilia is a treatable disease. It must be understood that the treatment of haemophilia is effective and has proven to be safe, and the provision of appropriate therapy is cheaper than treating subsequent complications.

READ MORE
event

Hemophiliac families day

Annually, starting with 2009, the Romanian Hemophilia Association – Covasna Branch organizes the Family Day. The purpose of the meeting is based on the need to strengthen the links between the patients suffering from this disease and their families.In the opening, Mr. Trucki Mihaly, the president of the branch greeted those who met at this celebration, after which Mr. Andrei Daniel, the president of the national association, presented the situation of haemophilia in the country. It is normal for us to still be dissatisfied, says Daniel, but the treatment of medicines has been significantly improved for those suffering from this disease, especially for children through the prophylaxis program, due to the ongoing efforts and campaigns organized by the Romanian Hemophilia Association addressed to the Government of Romania. He showed that although there are few hemophiliacs in number, they can put pressure on the Government of Romania by organizing conferences and public awareness campaigns. He had words of appreciation for the activity of our branch and shared books and brochures on the hemophilia of the families present.
Members of the local branch also participated in these events of the Romanian Hemophilia Association.
Mr. Kiss László, Covasna County Clerk, presented the report of the local branch. Mr Kiss emphasized the unity of those suffering from this disease. The association must continue to fight, so that today’s youth will not become disabled people of tomorrow, no person with haemophilia will not live in suffering, pain, disability or with the prospect of a shorter life. Covasna branch has always been a bridge between the two national associations. With the new elections a lot has changed in the Hungarian association, but at the meeting the desire to continue the cooperation between the representatives of the haemophilic ones in Romania and Hungary was affirmed.
Further, Daniel Andrei, President of ARH, as well as Péter Nagy and Gömbös Erzsébet, members of the Hungarian Hemophilia Society board answered the questions of those present.
Mrs Gömbös was very impressed by the fact that the little ones have prophylaxis in Romania and are holding our fists to achieve the same with adults.
The second part of the meeting was intended for the joy and celebration of the event. Families discussed their problems, made new friends and acquaintances, played football.

READ MORE
event

Camp Ray of Hope

The year 2020 marked the 15th anniversary of the STAR Children Relief Organization, led by Adriana Henderson, organizing camps for children and young people with haemophilia and oncological diseases in collaboration with the Romanian Hemophilia Association.

The Camp Ray of Hope has meant, over time, for hundreds of young people, carrying out fun and recreational activities, educational, socializing and creative workshops. In this camp, every year, a number of 40 children and young people with haemophilia benefit from sports programs, counseling services in order to raise awareness of their illness and increase self-esteem. There are also educational programs regarding the knowledge of their own disease and the learning of the self-injection procedure for greater patient independence. Also, the creative workshops increase the ability of the children to communicate, to pay attention and to discover the potential of each individual. stimulating each child to develop their own personality and encouraging them in group activities. At the anniversary clock, the camp Ray of Hope, was held in both Romania and Italy. The personal experiences of the children are shared through the eyes of some of them in the pages of the magazine and we wish you a pleasant reading .

Alex confesses to us. “I really feel like a normal child, to have a happy childhood, to forget that you have a health problem, to do whatever you want, not to be afraid that you may hit yourself and that you have no treatment. This camp gives us the opportunity to meet special people, visit sights and take trips. For me personally, this camp has meant a lot from all points of view. We thank all the sponsors, doctors, assistants, volunteers who were with us and without whom this camp would not have taken place. I wish this camp to be organized for many years from here on. ”

READ MORE
event

Holyday in Waldschach – Austria

Our childhood was marked by those words: “you are not allowed there”, “do not do this”. The lack of treatment and specialized staff in the areas we come from has somewhat restricted our childhood. But here, in the camp in Austria, we could do what we wanted. I swam, surfed, climbed the mountain, saw animals at the zoo, climbed the cable car and went down with the bob.
I made many friends, from the volunteers who came to the camp to the medical staff, all very wonderful people willing to help and guide us at any time. I left home with my mind and soul full of beautiful memories, with the thought that maybe next year we will meet again and tell us everything we have lived before. It was daylight, the rays of the sun caressed my face, I opened my eyes, I arrived at the bus station in Timisoara where my parents were waiting for me. We hugged and headed home, eager to tell them and show them pictures of the wonderful places and people I met there, Bogdan says.

READ MORE
event

Hemophilia and couple life

We started from the following question: How to have a healthy marriage in the context of a chronic illness?

Objective: Providing support, counseling and personal development of married hemophilia and life partners in order to increase the quality of life by integrating them into educational, psychosocial and recreational programs.

Context: Hemophilia is a serious disease. When not properly treated, the joints become the source of permanent problems and have a negative impact on the daily life of the hemophiliac. From school to professional and family integration, the person with hemophilia needs support and support. For the general population, the stage of marriage is not without worries, worries, problems or happiness. People with haemophilia are having difficulty choosing their life partner and the number of those getting married is small. estora in educational, psychosocial and recreational programs. Marriage is beautiful but it is not easy to get to be so as you have to work for your couple relationship. Hemophiliacs like other people go through difficult times and times of illness and lifestyle, often without a sustained balance, affect their own family and especially the couple. Marriage is the choice of a lifestyle that goes beyond any limit of illness, race, ethnicity, religion, social status, disability or belief. Among the difficult situations that couples encounter are: lack of communication, partners do not feel understood, decreased passion or lack thereof, routine or boredom in the couple, disinterest or indifference to the partner, quarrels often about important or less important things, activity low sex, financial problems, lack of respect, mistrust. Even if the hemophilia patients in Romania who are married are in a difficult medical condition, we want them to believe that they can have a happy marriage and to challenge them to do everything in their power to reach this goal with their partner.

Why a school of hemophilia for couple’s life?

• because, at present, the family is intensely exposed to disease pressures, devaluation and disintegration;
• for the quality of married life, which impacts the whole family, economy and society;
• to encourage a healthy family life and healthy marriages
• to bring relief and healing where appropriate.

 Objectives:
• a time dedicated to promoting family values, priorities and health;
• understanding and awareness of both partners of the other’s needs;
• a context in which each married couple can refresh, energize and improve their marriage.

READ MORE
article

Dear friends,

The difficult burden of the disease makes us aware that involvement of everyone, patients, parents, doctors, supporters, together with the responsible institutions, will bring in the near future, permanent access to treatment and multidisciplinary care, thus leading to a life. without major restrictions for hemophilia patients.

The Romanian Hemophilia Association (ARH) represents the interests of all patients with hemophilia and vonWillebrand’s disease in our country, being the only patient organization in Romania recognized and affiliated as a full member within the World Federation and the European Hemophilia Consortium.

Dedicated doctors, parents, patients with haemophilia, understood how important it is to become the spokespersons for our life interests, which is why, in our country, the Romanian Hemophilia Association was founded in 1992, following the efforts of Prof. Margit Serban and Mr. Conf. Daniel Lighezan, to whom we give full gratitude for the effort, energy, devotion and permanent effort they have in increasing the quality of life of patients with haemophilia in Romania. The Romanian Hemophilia Association has been affiliated with the World Hemophilia Federation since 1994, later becoming a full member of the European Hemophilia Consortium.

The reason for the establishment and existence of associations of patients from all over the world that unite in each country the community of patients with haemophilia, has been and remains an extremely important one, as the people with haemophilia know best their needs, being the best lawyers of their cause.

The goal of hemophilia treatment, declared by the International Hemophilia Federation, is to “minimize disability and prolong life, to facilitate the attainment of physical and social well-being and to help each patient reach their full potential.”

Keeping hemophilia under control requires prompt and sufficient treatment. This can be achieved by the existence of a functional network for the treatment of haemophilia and our compliance, of patients.

That is why “no child born with haemophilia should live in physical suffering, disability or the prospect of early death” (FIH). By proper treatment, a person with hemophilia can have high life expectancy, a life with few restrictions.

In order to achieve this goal we need our vision, unity and involvement of all, those who have on their lips the word “haemophilia”

I wish you all good health!

Daniel Andrei,

President ARH

READ MORE
partner

World Federation of Hemophilia

The World Federation of Hemophilia was established in 1963 by Frank Schnabel, a successful businessman from Montreal, with severe A-type hemophilia. He had a vision, namely, to improve the treatment and healthcare provided to hemophilia patients worldwide with the help of an international organization. Initially, the Federation was composed of 6 national patient organizations, which were quickly joined by others, reaching today a number of 134 national patient associations, including the Romanian Hemophilia Association, the only association in Romania that has this status.
In 1969, the World Health Organization recognizes the importance of this entity and its international reputation, which led to the establishment of official relations between the two through the implementation of joint projects.

WFH’s vision is the one that calls for “Treatment for all”. Thus, the federation’s mission is to improve and support healthcare for people with haemophilia worldwide.
The directions are :

• improvement of treatment standards, supervision,
• advocacy and research on improving treatment for people with haemophilia,
• training, educating and informing on the problem of haemophilia and the efficient management of the resources attracted to improve and support the projects carried out by the WFH .

It is also being pursued :

• improving treatment in countries where its granting is deficient,
• ensuring continuous development, increasing access to treatment for vonWillebrand patients and other deficiencies of coagulation factors,
• sharing knowledge and increasing capacity through information exchange,
• promoting access to efficient and safe viral products.

The World Federation of Hemophilia is positioned so that it can face the challenges that arise. Successful programs are underway that in many countries make a difference in the lives of people with haemophilia. The perspectives are challenging and in a large number, but the vision clearly shows the unity in achieving “Treatment for all “

READ MORE
partner

European Haemophilia Consortium

The European Hemophilia Consortium (EHC) represents the group of patient associations at European level, representing national patient organizations in 43 countries. EHC is involved in reducing the burden of the disease both on an individual level and on society as a whole. Its mission is to improve the quality of life of people with haemophilia in Europe. The consortium is engaged in the activity of health policies for hemophilia at European level, medical professionals, patients and the general public to communicate their expertise and knowledge and to show how to live with this disease.

On October 6-8, 2000, EHC held the annual conference in Timisoara, where more than 70 delegates from over 26 countries participated, confirming the role and place of the Romanian Hemophilia Association in the development of health policies for patients with haemophilia. from Romania. The same annual conference was also held on October 4-6, 2013, in Bucharest, with the participation of over 250 representatives of the associations of patients, doctors, supporters and collaborators, occasion with which was signed the memorandum between the Ministry of Health, the European Haemophilia Consortium and the Romanian Hemophilia Association .

The EHC roles are:

• Ensuring the best treatment for hemophilia patients in Europe.
• Transmission within the consortium of expert knowledge.
• Consultation with European profile institutions.
• Shares the experience of other countries and encourages cooperative activities for comprehensive care.
• Cooperates with medical and scientific professionals.

• Promoting patients’ rights.
• Monitoring and influencing the development of European health policies.
• Stimulation of scientific and research activities in the field of haemophilia.

READ MORE
  • 1
  • 2