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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.

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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.

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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. ”

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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.

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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.

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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

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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 “

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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.

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Coalition of Organizations of Patients With Chronic Diseases in Romania

COPAC was established in 2008 as a need for patient organizations to act in unison to promote and defend the rights of patients in Romania. Although it is a relatively young organization, it gathers within it the experience of the member organizations and wants to be a unitary voice of the patients with chronic diseases in Romania, with representation at the legislative and administrative level, at national and local level.

COPAC is a full member of the European Patient Forum since 2010.

COPAC objectives :

• The patient should be located in the center of the healthcare system and have access to appropriate services and treatments;

• Financing of health in Romania at European level;

Consult the patients in the real way in the changes they make in the system;

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