admin

International Gaucher Day

25th of July (Friday) 2014, Skopje R. Macedonia

10:30 – 11:30 h.

Dear members and supporters,

The Association of citizens for rare diseases LIFE WITH CHALLENGES – Bitola, will organize an event for 26th of July, the International Gaucher Day, for the first time this year, as it is launched by the European Gaucher Alliance. The 26th of July 2014 has been selected as it is the 160th anniversary of the birth of French dermatologist Philippe Charles Ernest Gaucher who was born in Nievre on the 26th of July 1854.

 On 25th of July we are organizing a bicycle ride with the support of the City of Skopje, To4ak, NaTocak and Genzyme – Sanofi Aventis Company. The  event has a goal to raise public awareness about Gaucher disease. 

The bicycle ride will begin at 10:30 h., on 25th of July (Friday), from the park Jane Sandanski, with end point at Zena Park at 11:00 h., (map – http://0.mk/VozenjeGOUCHER) where we will have a short press conferences with statements from members and supporters of LIFE WITH CHALLENGES.  

Gaucher disease was named after Philippe Charles Ernest Gaucher as in 1882 whilst still a student he discovered the disease in a 32-year old woman who had an enlarged spleen. At the time Gaucher thought it to be a form of splenetic cancer and published his findings in his doctorate. It was not until 1965 that the true biochemical nature of Gaucher disease was properly understood.
The development of Enzyme Replacement Therapy in 1991 offered life-saving treatment to many Gaucher patients however there remains much unmet medical need and in many countries patients cannot get treatment as their governments do not have reimbursement programmes in place or are unable to support all patients who need treatment. It is for this reason the EGA has launched International Gaucher Day with the aim of:

• highlighting the existence of Gaucher disease and its signs and symptoms to create greater awareness to ensure the patients are at an early stage to prevent misdiagnosis and incorrect treatment
• highlighting the existence of available treatments
• highlighting unmet medical need particularly the lack of treatment for patients with rare neuronopathic manifestations
• highlighting the tragedy of countless patients in many parts of the world who are unable to access life-saving treatments
• highlighting the importance for further research into Gaucher disease with particular reference to the links that are emerging between Gaucher disease and more common conditions such as Parkinson’s disease

Throughout the 40 member countries of the EGA patients, families, doctors, scientists and healthcare professionals will be marking IGD by holding events and activities using promotional materials made available through the EGA office provided by the generous support of our corporate sponsors.

Sincerely,

Vesna Aleksovska,

President of the Association of citizens for rare diseases

LIFE WITH CHALLENGES Bitola

Contact: +389 70 705 446, vesna.stojmirova@gmail.com, zivotsopredizvici@gmail.com

Dear friends,

Association of citizens for rare diseases “Life With Challenges“, will join the Skopje Marathon, with a group running under the motto – Running for a better life.

Link to Skopje Marathon page – http://skopskimaraton.com.mk/ 

Link for participation in the marathon –  http://skopskimaraton.com.mk/prijavuvanje/5km/

Note: If you are applying to participate in our group for rare diseases, in the part where it says GROUP, please write TRCAME ZA PODOBAR ZIVOT, that is the name of the group running to raise public awareness about rare diseases.

Also please write to us so we know that you are running in our group and you’ll get a t-shirt with our motto.  (zivotsopredizvici@gmail.com)

In Macedonia there are over 18 different rare diseases and over 200 patients who live with rare disease. For some of these diseases there is a treatment and for some research is in progress.

Everyone who wants to support us as a participant or sponsor is welcome.

For now we have the support of HAE Macedonia and the Association of Physiotherapists of Macedonia and HEMOLOG.

Let’s raise public awareness about rare diseases in Macedonia together!

PRESS RELEASE

First CEI Conference on building Regional Network of Rare Disease Organisations

23-24 March, Sunday-Monday, 2014, Hotel Porta,

Skopje, R. Macedonia

The Rare Disease Citizen Association “Life with Challenges” has held the First CEI Conference on building regional network of Rare Diseases Organisations, on 23-24 March, 2014 in Skopje R. Macedonia.

This conference is a project that has brought to strengthening the capacities of organisations and increase of networking and communication among rare diseases organisations in the region of Central Europe. With this conference we contribute towards raising awareness for rare diseases (in reference to general public, institutions and medical professionals).

The wife of the President of RM, Mrs Maja Ivanova, the managing director of the Bureau for Medicines of RM, Mrs. Katerina Aleksovska, prof PhD Aspazija Sofijanova,MD, managing director of the Children’s Clinic in Skopje, as well as representative from the Health Insurance Fund (HIFM) and Prof. PhD Dijana Plasheska Karanfilska from MASA (Macedonian Academy of Science and Arts) addressed the conference.

As a honorary sponsor of the European Organisation for Rare Diseases, Mrs. Maja Ivanova emphasized the importance of rare diseases in the health care policies at a national and European level “Rarity does not mean rare involvement, on the contrary, it means great and dedicated work for changes in this area.” She also pointed out that in Macedonia through the relevant ministries programs for treatment of rare disease patients are regularly adopted through approval of funds for appropriate treatments. The involvement of the authorities in this direction is recognized in the fact that two years ago the Committee on rare diseases was established. She also called for the provision of better treatment, early diagnosis and to help in the accessibility in efficient treatments. Merely, working for better quality of life for each patient.

From the Bureau for Medicines of RM  it was emphasised that they appreciate the cooperation with patients’ organisations. It was pointed out that they also work on faster registration of medicines for rare diseases. Through a government project equipment has been provided for early detection of metabolic disorders. At the end Mrs. Katerina Aleksovska stated that through joint organised endeavors they will continue to provide therapy and treatment for rare disease patients.

Saving a child’s life is priceless. It is one thing to say, and it is something different when you meet the patient and when you need to provide treatment.  Thanks to Vesna from “Life with Challenges”, who made us think about these patients and take action to provide treatment, I stand in front of everyone to say what is necessary. With the Committee we make small steps, but what we do is relevant. The challenges wait for no man, as a parent, as human it is my duty to do everything I can for these children.” – stated the managing director of the Children’s Clinic in Skopje prof. PhD Aspazija Sofijanova, MD.

Mr. Branko Adjigogov, counsellor of the managing director of HIFM, Mrs. Maja Parnadjieva-Zmejkova, stated that so far they have provided gluten free products for several rare diseases, and in the following 30 days treatment for Alagille Syndrome and Huntington disease will be provided.

Prof. PhD Dijana Plasheska- Karanfilska from MASA greeted the initiative regarding rare diseases and emphasised that what is important for rare diseases aside from research and study is the early detection and prevention.  The centre in MASA does not stop researching them. We live in time of fast technological advancement when sequenced research enables us to recognize certain genetic mutations and recognize more easily rare disorders, with screening detection and prevention will be conducted more easily, and with that provide better quality of life for those suffering from rare disease.

The president of the rare disease patients’ organisation “Life with Challenges” emphasized the need of adopting National Plan for rare diseases.  The aim of the National Plan for rare diseases is improvement of the quality of life of those suffering from rare disease and their families in Macedonia. Health is basic human right, regardless whether it is about rare or common disease.

The lack of existence of this strategy would mean a threat to human rights of patients with rare diseases and their families Also a systematic access to the treatment of rare diseases would be disabled which as a consequence would have the lowering of quality of life of patients and their families, inability to work, increase of physical and mental disabilities and high incidence of births of children with rare diseases. This would therefore mean lack of relevant plans for health protection in the field of rare diseases.

Within the conference a Manifesto was signed with which the rare disease patients ask for sooner adoption of the National Plan for rare diseases. The Manifesto was publicly signed and supported by patients’ organisations from the region. The patients cannot wait any longer.

The second part of the conference was devoted to presentations by doctors and medical professionals who work in the area of rare diseases. Experiences were exchanged with medical professionals from the country and the region.

The conference is supported by CEI (Central European Initiative), Genzyme- Sanofi Aventis and Celegene Corporation.

PRESS RELEASE

Conference on creating National alliance for rare diseases of R. Macedonia

22 March (Saturday) 2014 hotel “Porta”, Skopje, R. Macedonia

The rare disease citizen association “Life with Challenges”-Bitola together with The Association for Hemophilia, rare coagulopathies  and Von Willebrand- HEMOLOG and the Association for Emancipation, Solidarity and Equality of Women of Republic of Macedonia- ESE oranised a Conference on Creating National Alliance for Rare Diseases of R. Macedonia  on  22 March, Saturday in hotel “Porta”, Skopje. The conference is part of a project that is realized within the framework of the USAID Civil Society Project implemented by the Foundation Open Society- Macedonia. Also the project is supported by Genzyme- Sanofi Aventis and Celgene Cooperation.

“I am very proud that such a project is supported by the USAID Project on Civil Society implemented by the Foundation Open Society. Working with Vesna from Life with Challenges I have come to know the problems and challenges people with rare diseases in Macedonia face. Regardless whether it is about rare, very rare or extremely rare diseases there is need of joint support and cooperation to provide necessary care. This alliance will strengthen the cooperation and will give patients a stronger voice in front of  the institutions. I have met few patients and every time I am amazed by the courage and perseverance of these people who do not allow the rare disease to define them. They are the heroes of our times. I encourage institutions in Macedonia to make all that is within their abilities in order to help the families facing rare diseases.“-stated  Mrs. Mary-Jo Wholers,  Embassy of the USA in Macedonia, honorary member of The Rare Disease Citizen Association “Life with Challenges”- Bitola.

Prof. PhD Elena Kjosevska, specialist in social medicine, Public Health Institute of Republic of Macedonia, managing director of the Department for promotion of health, analysis and prevention of contagious diseases stated: “The Public Health Institute will be involved in the activities that lead to improvement of data gathering, monitoring and situation analysis and with the support of the Ministry of Health  to establishing registries which will offer basis for careful planning of measures for improvement of conditions in the area of rare diseases. With joint efforts we can move towards improvement of the situation with rare diseases and I hope that we will make successful steps forward for the benefit of all families facing rare diseases.“

Borjan Pavlovski,  coordinator of the Programme on Public Health and Women’s Health  in the Association for Emancipation, Solidarity and Equality of Women of R. Macedonia-ESE, stated: When the Associations Hemolog and Life with Challenges approached us for the first time with the idea for and Alliance we were taken by the enthusiasm that they fight the fight for people with rare diseases. Human rights in health care guarantee that every citizen has the right to health. We are aware that these are complex diseases and the treatment is often expensive, but this does not mean that these people should not be provided for in order to contribute society as healthy citizens. We know that the problems cannot be resolved at once, but step by step the aim can be achieved.“

Mr. Branko Adjigogov, counsellor of the managing director of the Health Insurance Fund of R. Macedonia, stated: “Unfortunately in Macedonia still there is not an official registry for rare diseases and that is a big problem, especially because of the fact that we cannot know the financial implications in order to bring right decision regarding treatment and care for patients. We have managed to contribute towards provision of appropriate diet which is medicine for certain diseases such as PET syndrome and Phenylketonuria and we continue with the endeavours to provide suitable supplements for Alagile Syndrome and Tyrozynemia. We hope that with such small steps we will contribute towards normalisation of the situation.“

Vesna Aleksovska, president of the Rare Disease Citizen Association “Life with Challenges”- Bitola, stated: “The idea for an alliance emerged from our cooperation and we are aware that joined we can have a stronger voice as rare patients. We are aware of the lack of sufficient epidemiological data, the need of screening, the need for improved diagnosis, the obvious need for an increase of the budget for rare diseases and amendments of the legislation on rare diseases and many other steps that need to be made in order to reach better quality of life for patients with rare diseases. The Proposal National Plan that we have created according to European Regulative is what we consider as a foundation for improvement of the conditions.“

Cveta Nakjeska, founder and member of the Managerial Board of HEMOLOG – Association for Hemophilia, Von Willebrand and rare coagulopaties  stated: Entering this alliance is a benefit for all of us. We are creating it in order to work towards better quality life, and not survival. The motto of the World Hemophilia Alliance this year is – Speak out: create change.  From small steps and locked doors we walk towards greater steps and unlocked doors. I believe and I am certain that this alliance will achieve its aim and form paper it will move into action.“

The main aim that was achieved with this project is uniting about ten rare disease associations with the aim for joint endeavours in fostering and support of reform in the health-care system in the area of rare disease. The main focus with the establishing of the Alliance was defining the National Plan on Rare Diseases  which will provide long-term solutions for the problems and challenges rare disease patients and their families face.

Among patient representatives, patient organisations and representatives from relevant institutions from Macedonia, representatives of EURORDIS (European Organisation for Rare diseases), EGA (European Gaucher Alliance) and representatives of patient organisations from Bulgaria, Serbia, Slovenia, Bosnia and Herzegovina and Croatia were also present. They represented their national alliances and federations and National Plans and Strategies on Rare Diseases in their countries accordingly.

Contact:

Borjan Pavlovski ESE 02/3298 713, 02/3298 295, bpavlovski@esem.org.mk

Vesna Aleksovska, Life with Challenges 070 705 446, info@challenges.mk, zivotsopredizivici@gmail.com, vesna.stojmirova@gmail.com

Dragi Lulevikj, Hemolog, 071 796 247, info@hemolog.org, dragi.lulevik@yahoo.com

  “Conference for establishing National Alliance for Rare Diseases of R. Macedonia“, on 22^nd of March, 2014 in Skopje, Macedonia

Dear members and supporters, 

Life With Challenges is already  planning the Rare Disease Day, 28th of February, 2014.

On 28th of February,  organize a press conference for media – discussion with patients/families/doctors/ health institutions under the motto of the Rare Disease Day 2014 – let’s Join Together for Better Care!, as we are in preparation of the National Strategy for rare diseases.

Also we will have sponsors/donors/supporters/volunteer  event as we are celebrating 5 years of the existence of the organization. We will award certificates to all people/companies/organizations/institutions that supported us through the years.

We will have a cocktail afterwards – participants gathering to discuss future improvements in treatment and care in order to improve quality of life, and to share experience on what does it mean to live with a rare disease.

Day before  rare disease day (27th of February) we will organize education events for students from the Medicine and Pharmacy Faculty with cooperation with the University Children Clinic Skopje.

We are also organizing exhibition On 28th of february: One day of my life with a rare disease.

If you have other suggestions or ideas for Rare Disease Day, we are here to review them.

Regarding Rare Disease Day events we are also open for cooperation with other Macedonian Organizations that want to contribute and participate in Rare Disease Day Activities – Together we are stronger – Let’s join together for better care!

Step 1: If you are an organization that represents some specific rare disease you are welcome to be our partner in marking the Rare Disease Day

Step 2: If you are  organization or institution that is not working specifically in the area of rare diseases you are welcome to join as our supporter.

Step 3: If you are individual you can volunteer and support our activities

Step 4: Contact us and send us information about how you want to participate in the Rare Disease Day activities: zivotsopredizvici@gmail.com, info@challenges.mk

Step 5: Be a part of Rare Disease Day 2014 – Let’s Join Together for Better Care!

Regarding the exhibition, we need your help and cooperation. 

Step 1: Do you want to participate in the exhibition?

Step 2: Do you have a photograph with a good resolution that you want to share?

Step 3: Write a short story about your life with a rare disease as a patient or as a parent, friend, spouse … or write a motto that gives you courage to face life with a rare diseases ..

Step 4: Contact us and send us a picture and a story: zivotsopredizvici@gmail.com, info@challenges.mk

Step 5: The pictures will be printed in poster format together with your story or motto.

Step 6: Participate in our Rare Disease Day activities and help in raising public and institution awareness about rare diseases

Step 7: Be a part of Rare Disease Day 2014 – Let’s Join Together for Better Care!

We are expecting your e-mail or phone call.

zivotsopredizvici@gmail.com, 070 705 446

Theme: Care
Slogan: Join Together for Better Care
Caring for people living with a rare disease has many facets. Some patients have access to medicines while others have no treatment available. Some patients are fairly independent while others require intensive physical assistance and equipment. Care can consist of medicines, products and devices, expert medical consultation, physical therapy, social services, respite for family members, and much more. For most children and adults living with a rare disease, primary care is provided by family members. Rare Disease Day 2014 focuses on care and encourages everyone in the rare disease community to Join Together for Better Care.
Patients and their families who feel isolated by the rarity of their disease should know that there are more than 6000 different rare diseases affecting over 60 million people across Europe and North America alone and millions and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone.

Healthcare professionals, researchers, pharmaceutical companies, and policy makers also frequently feel isolated in their struggle to find and provide care for rare diseases. Experience shows that bringing together scattered knowledge and resources for people living with rare diseases is the most efficient and effective way to mobilise the care patients and families need and deserve. In Europe, there are several areas in which access to rare disease care is advancing:

Shaping policies to improve access to medicinal products for rare diseases

Identifying and improving access to specialised social services for rare diseases

Centres of Expertise and European Network References

National rare disease plans for countries in the European Union … and beyond

The theme for 2014 highlights that the many different facets of rare disease care represents a universal need for patients and their families around the world. Advocating at the local and national level to improve the lives of people living with a rare disease and their families is necessary.

Considering rare diseases from an international perspective is also essential in order to send a strong message of hope to the millions of rare disease patients and families throughout the world who can break their isolation through a vast, united international network of solidarity. This year Rare Disease Day encourages us to continue finding ways to work together to provide the different kinds of care that people living with a rare disease need.

Let’s Join Together for Better Care!

Translation of invitation: Invitation – Rare Disease Day

Dear collaborators,

The Association of citizens for rare diseases “Life With Challenges”, invites you to the “First CEI Conference for building regional network of organizations for Rare Diseases”, on 23^rd – 24^th of March, 2014 in Skopje, R. Macedonia.

First CEI Conference for building regional network of organizations for Rare Diseases is a project that will contribute to strengthening of the capacities of the organizations and to increasing networking and communication between the organizations from the CEI region that work in the field of rare diseases. With this meeting we will contribute towards raising awareness (general public, government institutions, and medical professionals) about rare diseases in Macedonia and the CEI Region.

The focus of the project First CEI Conference for building regional network of organizations for Rare Diseases is on strengthening leadership in advocacy and lobbying for patients’ rights. The conference meeting is for sharing best practices in advocating for patients’ rights and sharing information on implementation of National Plans/Strategies on rare diseases in different countries.

 “First CEI Conference for building regional network of organizations for Rare Diseases”, on 23^rd – 24^th of March, 2014 in Skopje, R. Macedonia.

Sincerely,

Vesna Aleksovska,

President of “Life With Challenges”

Vesna Aleksovska, president of Life With Challenges, this year in October, become a member of the DITA Task Force (Drug Information, Transparency and Access) – EURORDIS.

The first meeting of the group was on 9th of December, 2013, in London.

Life With Challenges participated at the First National Conference for rare diseases in Serbia, Belgrade, 5-7 December, 2013 in the organization of the National Organization for Rare Diseases Serbia (NORDS). Vesna Aleksovska, was leading one of the the workshops for Strengthening Patient Leadership together with Vlasta Zmazek (Croatian Alliance fr Rare Diseases), Jelena Milosevik (NORDS), Mira Grujic Brojcin (Association for Epidemolysis Bullossa, DEBRA, Croatia).