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The Association “Together For a Ray Of Hope”

Adriana Henderson – American citizen of Romanian origin, began to think how to help Romanians born with the heavy burden of a disease, called haemophilia, who tormented their bodies and for which survival medication was almost non-existent in Romania.

Established in the United States S.T.A.R. (Start Thinking About Romanian) Children Relief, this being the beginning of a wonderful friendship between Adriana and the hemophilia patients in Romania.

In 2005, 5 years after the establishment of the S.T.A.R. Children Relief, Adriana Henderson comes to Romania and launches the FIRST MEDICAL CAMP  in ROMANIA, targeting hemophilic children. “Camp Ray of Hope” – would become year after year the soul child of Adrian Henderson, surrounded by American sponsors willing to be generously involved in building the miraculous oasis in which for one week a year, 40 children bathe in joy, forgetting the bad, foreshadowing and building self-esteem and the dream of tomorrow.

Since 2010, Camp Ray of Hope is expanding its activity with a new component – Oncopediatrics, the number of beneficiary children reaching 120 / year and in 2015, children with thalassemia have also joined.

Over the past ten years, Camp Ray of Hope organizers have attended numerous workshops and conferences in the USA and Europe, but especially as a volunteer in the NACCHO and Serious Fun Children’s Network, where they acquired the groundbreaking concept of Therapeutic Recreation, a technique introduced. premiered by Serious Fun Camp. The success of Camp Ray of Hope over the 10 years of organizational activity in Romania and of the high professional qualification experience, has been crowned by numerous International Awards and the recognition of the efforts in the world of the great organizers of specialized therapeutic camps.

Our efforts in the more than 10 years of camps have changed the lives of hundreds of children with chronic diseases in Romania.

WE ARE THE SINGLE CAMP SPECIALIZED IN THERAPY – RECREATIONAL IN ROMANIA for children with haemophilia, cancer and rare diseases.

Our camps are FREE for participants.

Together with volunteers from the United States, Canada, England, Italy, the children experience experiences and teachings that will become investments in Soul Bank, designed to help them overcome another year – not infrequently, until the next meeting.

Between two cures of cytostatics – and not only, the children spend with the volunteers from abroad and those from Romania, a dream week, the week that changes topics from year to year.

Our main purpose is:
Organization of camps for children with haemophilia, oncology and children with rare diseases.

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Medical Center for Evaluation, Therapy, Specific Medical Education and Recovery for Children and Youth “Cristian Şerban” Buziaş

Dear friend,
I want you to know that there is a family of doctors – teachers from Timisoara who know all these things that mark your life and have decided not to remain indifferent to your suffering, confident that the disease can lose its irreversible character.

 They thus emerged from the narrow sphere of selfishness to show others altruism, changed the comfort that social status could offer with the concerns and responsibilities of involvement, and, above all, turned their own suffering into relief for others.

This is how the “CRISTIAN ŞERBAN” Children and Adolescents Evaluation and Recovery Center in Buziaş was set up.

Divinity has made you a wonderful being. Your physical and mental properties, the harmony and complexity of your spirit, soul and body entitle you to believe that you are superior to any other form of earthly life.You are the material form of a sublime divine thought. .You are a masterpiece whose origin transcends the visible world. But what you see in yourself does not help you to find yourself in my statements, because in you you see the consequences and effects of the evil that has entered the world long ago, bringing with it the damage, bringing the disease and suffering of which, more or less, we all have a part. Without being guilty of this part of your suffering it is “over the top.” Shortly after you become aware of your own existence, you find out that you are different from the other children; you have learned that many of the things that make your childhood glamor are forbidden to you, and soon the medicines and hospitals became friends that you did not want. Slowly – slowly, your identity has been associated with a new aspect, the hemophilic one. Later, frustrations, broken dreams, a lot of fog about your future and the conviction that there is no real possibility to change your situation.
I would like to talk to you about this recovery center, hoping that if you have never been here, my modest description will help you to imagine it, and if you have been, it will bring you pleasant memories.

Buziaş is a quiet little town, halfway between Timisoara and Lugoj. It is a city that until now has been known for its mineral waters and the spa resort, which is one with tradition in Romania. It was here that the Serban family of teachers decided to build a hospital for children and adolescents suffering from diabetes and hemophilia. You will find it in a secluded, beautiful and quiet place, on the outskirts of the city park. You will discover that he is welcoming and endowed with all the necessary treatment and for your comfort. You will meet here doctors  trained and interested in you , who will give you an accurate assessment of the stage of the disease and then recommend a specific and appropriate treatment, which considers your recovery both physically and mentally, if applicable. According to a carefully designed program, you will have sessions of physiotherapy, massage, swimming pool, physiotherapy, all in rooms equipped with a pleasant ambience.

All these procedures are part of a recovery philosophy that may be new to you, that of active recovery. You will become much more active without fear of a hemorrhagic incident, because you will be prophylaxis or episodically sustained with an adequate concentration of factor. Nor has your medical training been neglected, which will be made available to you by the doctors of the hospital, so that you can know as much about your illness and about the present and future possibilities for its treatment.

If by your nature you are meditative and have more questions than answers about your own being, you can find a good confidant in the hospital psychologist. It will be good for you to find out how your illness determines your thinking and how to limit its influence on your thinking. In this sense you will need much more self-knowledge and a knowledgeable guide so you don’t get lost in the maze of your own psychic.

If you feel the need for a secluded place where you can talk to a book or a friend, you will find it in the hospital yard, among beautiful floral arrangements. In the evenings you will be able to spend them in the library of the center, which for several hours every evening becomes the place of entertainment activities: general culture contests, video or TV watching, music. You yourself can participate in organizing different competitions and championships, along with the three educators who will gladly accept your collaboration. These evenings can be the beginning of friendships that you can enjoy over many years.

Tired after a full but enjoyable day, you can retire to your comfortable room for a restful sleep. In addition to all these things that are mainly related to the hospital equipment, you will also find here a special, relaxed and friendly atmosphere, created by a staff that understands your age and mentality. More than anything else I would like to tell you that this hospital is a place where destiny can change for the better. You can expect spectacular improvements in your physical condition that will bring major changes to your life. If my statements seem exaggerated, you should know that I have not told you anything that is foreign to my own experience..Have you noticed, my friend, how many things are available to you in this hospital?You may wonder, of course, what you could give in return. Nothing but gratitude and gratitude. If you’ve ever been to this hospital, share with others about the good that was done to you here and come back with confidence. If you’ve never been, come without the fear of being disappointed. Until then, greetings from Buzias!

Our objectives:

• Clinical and paraclinical diagnosis and evaluation, ie establishing the stage of the disease, the presence and severity of complications in children and young people with type 1 diabetes (insulin dependent) and in patients with hemophilia.

• Improving the therapy of patients with type 1 diabetes and with hemophilia, by adapting the therapeutic measures to the clinical status of the disease.

• Medical education, both for children and young people with type 1 diabetes and those with hemophilia, as well as their families, an extremely important means to acquire the knowledge necessary for quality control of the disease, which lasts a lifetime.

• Prevention and treatment of complications and sequelae, mainly induced by hemophilia, but also by disease of blood vessels and nerves (angiopathy and neuropathy) in diabetes .

• Locomotor recovery of joint, bone and neurological disabilities that can accompany the two diseases and others of the patients admitted to the recovery compartment.

• Socio-professional counseling of patients .

• The psychological and material support of children from very poor families .

• Creation of a scientific research base oriented to the epidemiological, etiopathogenic clinical and evolutionary aspects of type 1 diabetes and haemophilia.

• Improvement of doctors and nurses from all over the country in the management of these conditions.

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National Alliance for Rare Diseases in Romania (ANBRaRo)

The National Alliance for Rare Diseases of Romania (ANBRaRo) was established at the initiative of the Prader Willi Association in Romania in August 2007, through a project funded by CEE Trust. 32 founding members joined the founding of the Alliance: rare disease organizations and patient groups for which the disease is so rare that there is no association. ANBRaRo’s mission is to develop and carry out lobbying and advocacy activities to improve the quality of life of patients with rare diseases in Romania.

Purpose: To increase community responsibility towards patients affected by rare diseases by involving social actors in this field: patients, families, specialists and authorities.

General objective: to improve the quality of life of people with rare diseases in Romania.

Objectives:

• Developing a national network made up of key representatives of patient organizations, communities and public institutions;

• Proposing a national strategy for addressing rare diseases and implementing them in collaboration with the Ministry of Health – National Plan for Rare Diseases;

• Organizing information campaigns on rare diseases – annual Rare Disease Day, Conferences, Europlan Project;

• Creating and organizing training programs on addressing rare diseases (for all the social actors involved);

• Collaboration with organizations and private persons in the country and abroad, concerned about the same issue;

• Support and orientation of new groups and organizations.


At national level ANBRaRo is a member of COPAC.

At European level ANBRaRo is a member of EURORDIS (European Organization of Patients with Rare Diseases Organizations) and a member of the Council of National Alliances of Rare Diseases.

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Leadership Camp

The leadership camp is important in the light of the fact that in our community, hemophilia patients and vonWillebrand’s disease, education, information, organizing events, etc. are always needed. Therefore, a generation of leaders will generate and facilitate good practices and ideas transfer to local communities so that the quality of life of patients is improved.

The camp program focuses on transferring information to participants about the basic skills they will need to become leaders in our community. In addition to specific presentations and workshops, at the same time our participants will live in tents, learn about the environment, history, how to make a camp fire, visit tourist attractions and amazing natural wonders.

Our specific activities focus on:

  • team building skills;
  • communication skills;
  • relevant information on the treatment of haemophilia and its prospects;
  • developing key management skills

Our goal is to strengthen the Hemophilia Association in Romania with young and active members.
As a leader you have to make a commitment to yourself that you want to constantly develop. A leader leads by his own example. Today, times have changed. You need to think, analyze and if you reach the conclusion that it is worth it, then act with courage. If we allow ourselves to be dominated by fear, we will never succeed in achieving something truly important

Always do what you feel is honest and fair

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Hemophilia cross

“Today you run in my place, tomorrow we run together”, it is Andrei’s wish to see his dream fulfilled, that is, that in the future, with a complete and constant treatment, to run alongside his friends.

Andrei,  goes to school and sees all the other children playing, running, jumping, he is on the ladder, his hand above his knee, which hurts him. Sighs. He wants to do what others do, but he can’t ,not now . He hopes for something, which his parents tell him will be better. The same hears from  older hemophiliacs. And he doesn’t understand. Why not now? He is receiving treatment, not for a long time, which is why his knee joints are partially damaged. Twiches when he sees Mihai, his colleague, running after the ball that jumped near him, shot by the other boys. Mihai smiles, asks Andrei how he feels and receives the same answer, fine. Andrei can be like Mihai. To run, to play football, to ride a bicycle. Therefore, out of solidarity, Mihai and other children and young people, responded to Andrei’s invitation to run for him.

They can always be among us: at school, at work, in the hospital; sometimes they complain, we see their suffering; most of the times they cry alone at home. Regardless of the situation, they carry their suffering with dignity. Your own illness. It is called hemophilia, when the disease affects only boys, or von Willebrand’s disease, when it manifests itself in both males and females. It does not heal but is treated. Every year, on April 17, is celebrated the International Day of Hemophilia, a day dedicated to those affected by this disease. There are people who strive to lead a normal life even if, often, the system does not help them.We organize this event with the thought of a normal life for each of us. Whether we are sick or not, we live in the same community and it is good to do so in a beautiful, healthy and responsible way for one another.

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Winter school for hemophilia

Education is so important that every association of patients and physicians has realized that a coherent and common plan will achieve success. Thus, the Romanian Hemophilia Association in collaboration with the “Cristian Şerban” Foundation starting in the summer of 1992, in Cheveres, Timiş county, offered the first camps dedicated to hemophilia patients in which, information on disease, treatment and recovery, occupied central area of of these meetings. Subsequently, with the opening of the “Cristian Şerban” Medical Center in Buziaş, these aspects were professionalized and the assistance of patients with hemophilia increased significantly with the existence of a diagnosis and treatment program dedicated to hemophilia. It is natural and important as subjects. News and perspectives in the treatment of haemophilia; the physio-kinetotherapeutic assistance of the patient with haemophilia; invasive orthopedic interventions in the treatment of patients with haemophilia; assistance of psychological, family and social support; the particularities of physio-kinetotherapy in hemophilia; patient compliance and adherence; hemophilia inhibitors; Present therapeutic realities and opportunities for perspective, have been and will remain important topics to be discussed within our community .

THE MAIN LEARNINGS OF THE SCHOOL FOR HEMOPHILIA

Nothing about us, without us!
The wonder of improving our chance of therapy was possible … only with the full involvement of patients and doctors! The cost-effectiveness and efficiency of the therapy have been proven; its application must be watched! Ignoring and not using the opportunities offered is not only shameful, inadmissible, but also guilty.
Preventing it is cheaper than treating it. Not to treat is more expensive than to treat!

Prophylactic substitution introduced early in childhood is the key to success, but it is profitable even in the conditions of its later initiation! Even a single joint bleeding can be too much !!!
In case of doubt, substitute yourself. Treat yourself immediately! At home! Do not delay more than 1 maximum 2 hours from the onset of  bleeding..

Never below 1% factor level VIII!
It’s not just me … there are many others like me, with equal rights to treatment.
Only a consumption of a minimum of 4UI Factor VIII / head / year and 0.5UI Factor IX / head / year in the country gives us the chance of equal, non-discriminatory access to satisfactory treatment.

Kinetotherapy is indispensable in our lives. “Use it. Or loose it (muscles and joints) “
We agree with our National Registry, provided we have restricted access to our data.

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