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Help line for patients and families with rare diseases 2015-2017

In the past 3 years we have a functional help line for patients and families with rare diseases. It is not an official free number you can call but it is a hard work to be done. We usually communicate through telephone, e-mail, Facebook page, Facebook group .

Usually we have one or 2 calls on a daily basis, not just in work days but also on weekends and holidays. Sometimes we get calls from people who face other kinds of diseases and we try to direct them towards reliable organizations.

With a goal to help more we are in communication with organizations from the region like Croatia, Serbia, Monte Negro, Bulgaria, Bosnia and Herzegovina. We are all enthusiastic and persistent in our work to support patients. We also organize regional conferences, meetings, we share best practices, contacts from medical professionals, we advise and support each other to achieve more for the families who face rare diseases.

The request for help are usually those bellow:

  • Do I have a rare disease or just ordinary one?
  • Where can  find information?
  • Can you translate information for my diseases?
  • Is there a medicine?
  • Is there any other treatment available or not?
  • How should I be registered to get a drug?
  • Do I have the right to social aid?
  • Do you know someone with this diseases?
  • Can you connect me with others like me?
  • Do you know doctors that can explain about my disease?
  • Which institution should I contact?
  • How to write a letter to institution?
  • Can you take my documents to the institutions in my name?
  • Can you help me gathering documentation?
  • Is stem cells treatment useful?
  • Who in Health insurance is responsible for rare diseases?
  • Who in Ministry of health should I contact?
  • Is my special food for my disease refunded?
  • How can I get refund?
  • Is the clinic responsible for provision of my drugs?
  • Who decides if I get a drug or not?

We try to answer immediately if we can or in 2-3 days. If do not get an answer until than, we call and say that we need more time. If we are still not able to help we try to connect and communicate with other organizations and institutions.

Also through the help line we managed to help in foundation of 3 new associations.

We gather patients with the same disease, they have a meeting and decide on further actions. Of course we helped them in documentation and registration, we help in project writing, in letters to institutions, we give contacts, we arrange meetings and other similar support. For now we helped, Wilson, Thalassemia, and Spinal Muscular Atrophy.

 

Sometime they do not form an association but an informal group within the association Life with challenges.

We also invite new organizations to join the national alliance for rare diseases of R. Macedonia. We think that cooperation is very important if we want to achieve our mission and goals.

 


About the Association Life With Challenges

Association of citizens for rare diseases LIFE WITH CHALLENGES Bitola

Our organization is founded with the help and support by the National Alliance of people with rare diseases of Bulgaria. The first meeting of families and doctors connected to rare diseases in Macedonia was organized by Bulgaria in Ohrid, Macedonia, in June, 2009.

Since than the patients in Macedonia decided to form their own organization and fight for their rights. This is how Life With Challenges was born.

In the next 3 years we were gathering members and learning how to manage and grow into a strong patient organization.

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Our Vision and Mission

Vision

Our vision is achieving the best possible quality of life of patients and families with rare diseases, through best possible social and health services.

Mission

Our mission is developing solutions and politics through implementation of activities for improving quality of life of patients and families with rare diseases. The goal of Life With Challenges is to help and support patients and families that face life with rare diseases. Our mission is realized through the following activities:

  • Helping and informing people with rare diseases, creating and sustaining communication between patients
  • Raising awareness in society through education about the problems of patients with rare diseases
  • Organization of public events, congresses and meetings with a goal to educate and inform
  • Support of research and education about rare diseases
  • Organization of info centres for people with rare diseases
  • Organization of cultural events for raising public awareness
  • Distribution and printing of info-materials about rare diseases
  • Social rehabilitation for people with rare diseases
  • Finding funds for treatment of patients
  • Documentation of patients with rare diseases

Important Issues

  • Advocating for patients’ rights.
  • Raising awareness in society about rare diseases, about physical and psychological consequences.
  • Helping and informing people with rare diseases.
  • Helping doctors to get information about diagnostics, treatment and rehabilitation of rare diseases.
  • Communication with other organizations about rare diseases in R. Macedonia and in the world.
  • Communication with health institutions in R. Macedonia for better treatment of people with rare diseases.

What are we doing?

  • Negotiating with the Ministry of Health
  • Informing the President of the Government and the Minister of Finance about the importance of treatment for patients with rare diseases
  • Raising awareness to get more support from the people in Macedonia
  • Cooperating with the media to raise the level of awareness about our problems
  • Cooperating with other patient organizations to act together about important patient issues

Rare diseases in the organization

The association of citizens for rare diseases Life With Challenges, is founded by patients and parents that face with life with Gaucher. Later in the association joined patients with Hereditary Angioedema, Allagile Syndrome, PKU and others.

The association is representing patients and parents with rare diseases that are members in the association. Rare diseases represented by the association are: Gaucher, Phenylkeotnuria, Hereditary Angioedema, Allagile Syndrome,  Tyrosinemia, Lenox Gastaut Syndrome, Congenital Muscular Dis trophy,  Congenital Cataract, Epydermolysis Bulosa, Carnitine plamitolitransferase deficiency, Pulmonary Hypertension, Adrenomyeloneuropathy, Wilson Diseases, Williams Syndrome, RET Syndrome, Amyotropihi lateral sclerosis – Lou Gehrig’s diseases, Myasthenia Gravis , Huntington disease, Porphyria, malignant paraganglioma feohromocitom tumor, arthogryposis multiplex congenital, Fibrodysplasia ossificans progressiva (FOP), Multiple myeloma, Myelodysplastic syndrome, MPS 4 – Morqio Syndrome,   Strümpell disease – Hereditary spastic paraplegia, Takayasu arteritis, Primary ciliary dyskinesia, Kartagener type, Mastocytosis, Juvenile dermatomyositis, Friedreich ataxia , Acute intermittent porphyria, Cystinuria, Stargart, Lowe Syndrom, Dextocardia Situs inversus, Heurofibramatozis, Phemgus Vulgaris, Wegener’s Granulomatosis, Ehlers – Danhlos Syndrom, Alport Syndrom, Polimiozitis, Mastocitozis, Burgada Syndrom, Fanconi, Niemann Pick C, Chronic inflammatory demyelinating polyneuropathy, Carney Complex,  Erythrodermia Ichthyosiformis congenita, Guillain Barreov Sindrom, Malignant Melanoma, Rendu-Osler-Weber disease -hereditary hemorrhagic telangiectasia(HHT), Systemic vasculitis-Sy.Churg-Strauss, …  and others that will join us and ask for help and support.

The association does not represent rare diseases that are not registered members in the association.

Some groups of patients have their own associations and we encourage and support other groups to form associations since we think it is important for each disease to have association or at least a support group.

The association also is a member of the National Alliance for Rare Diseases of R. Macedonia (14 organizations representing different rare diseases and patients rights).

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What have we accomplished?

 

Program for rare diseases at the Ministry of Health of Macedonia

The first program for rare diseases at the Ministry of health is from the year 2009 and it included 3 patients with MPS 2 – Hunter syndrome.

There were no further changes until 2015. From 2015 there is a register for RD at the Ministry of Health – more about that can be found in the program for RD from 2016.

The New Programme of the Ministry of Health for 2016 is as it follows:

  1. Diseases which can be treated with medicines;
  2. Diseases which are rare, but for which there is no treatment but which are important for the diagnostic and planning.

In the registry of patients with rare diseases are included solely the diseases listed in the ORPHAN list of rare disease – reviewed in July 2014

http://www.orpha.net/orphacom/cahiers/docs/GB/List_of_rare_diseases_in_alphabetical_order.pdf
In the Registry of rare disease patients are only included diseases which affect one in 2000 persons, but which do not exceed 20 affected at the level of Republic of Macedonia
Medicines are provided or the patients who are registered in the Registry of rare diseases through this programme. The provided medicines are necessary for the patients and represent an only choice of treatment of the rare disease, and they are not on the positive list of medicines

For the realization of this programme, treatment of rare diseases with therapy and medicines which have not been previously applied in rare disease treatment, for the provision of the necessary equipment for diagnosis of rare diseases, providing education for the staff who diagnoses and treats the rare disease patients, it is expected that in 2016 total funds in the amount of 203.000.000,00 denars will be needed.

  • Treatment of patients with a rare disease regardless of insurance status 197.000.000.00
  • Providing the necessary equipment for diagnosis and treatment of rare diseases 4.000.000.00
  • Providing education of the staff who diagnoses/treats the rare disease patients 2.000.000.00

We hope that changes will be made in the program for 2017 since as patients organizations we all reacted to the limitation of the number of patients (20 per diagnosis). And we reacted to the lack of further criteria and step by step explanation of how patients can be registered and get the needed treatment.

Rare disease registry in Macedonia

The register for rare diseases is consisted of collected data for all diagnosed cases of people with rare diseases in a population.

The registration is a process of systematic collection and data analysis so that it can provide information on the number of rare diseases and the number of people affected by them.

In Macedonia the register for rare disease is at the Ministry of Health. Patients need to send a request with appropriate diagnostic information so that they can be included in the registry. Also doctors can send information about patients so that they can be included at the registry.

The commission for rare disease is consisted from doctors from the clinic centre in Skopje. They gather to discuss about registering patients in the rare disease registry and further they discuss about the possible treatment and tis provision to the patients who need it.

For now the Program for rare diseases has limitation – it says that treatment will be provided to patients with rare diseases (where rare diseases are those 1 in 2000 people as from the list of www.orpha.net , but only if they are not more than 20 in R. Macedonia and have no treatment at all from others like from the Health Insurance Fund or from the Clinics). We hope that this limitation will go away and that all patients will get treatment. We also hope that drugs will be provided in a timely manner so that patients won’t be left without therapy for long periods of time (3 months) because of administration procedures.

In 2017 the Health Insurance Fund announced that they will cover diagnosis for patients when they can not get a diagnosis in the country in time of 6 months which is the same as the law in Serbia and we proposed it to the institutions right after we saw it was working in Serbia. We are very happy about this and we hope it will help families facing rare diseases.

All these accomplishments are made with cooperation with other rare disease organizations in the National Alliance for rare diseases of R. Macedonia.

Rare disease awareness

Rare disease day

We started marking rare disease day since 2012. In the past 2 years we are marking the day together with the organizations from the National Alliance for Rare Diseases of R. Macedonia.

Every year we manage to organize more events for raising public awareness with the help of our members and with cooperation with other organizations.

In 2014 we got the support from the wife of the USA ambassador in Macedonia Ms. Mary Jo Wholers and in 2015 and 2016 we had the support of the First Lady of Macedonia – Ms. Maja Ivanova.

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The part of “Life With Challenges” in Rare Disease Day, 2016 which we are very proud of was a promotion of the study for rare diseases that was realized in 2015 and can be downloaded at the following link – .

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Poster from the study was presented at ECRD 2016.

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We are proud to say that Rare diseases get more attention in the media and at the institutions in R. Macedonia. We hope that more events will contribute towards acceptance from the public and acknowledgment from the institutions.

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In 2016 we managed to organize events in Bitola with the help of Hepar Centre Bitola, in Prilep with the support of Jasminka Hristoska and in Ohrid with the support of Gordana Loleska and the Red Cross from Ohrid.

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Other important activities

Postal stamp for rare diseases

Last year a member of the association for rare diseases Life with challenges, a mother with a child with Alport syndrome, Gordana Loleska, employed in the post office in Ohrid, started an initiative for creating a postal stamp with the logo of rare disease day to help in raising awareness for rare diseases in Macedonia. This initiative was supported by many medical professionals in Macedonia who send letter of support to the Direction for philately to the Director Mr. Elez Elezi.

We did an internet search and we realized that this kind of stamp will be first of its kind – dedicated to Rare Disease Day to all the Children with Rare Diseases and it is a great initiative for the Macedonian post office, an accomplishment on world level.

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This year the post accepted this initiative and we hope that the stamp will be ready for distribution for rare disease day 2017. The name of the stamp will be Children with rare disease.

The stamp will be promoted by the national alliance fir rare diseases of Macedonia and also by the post office. It is a great idea that came true … a nice way to promote awareness … we hope that other countries will do this also.

We are very proud of Gordana Loleska who enthusiastically took this idea forward. We also want to say thank you to the general director of the post office Mr. Fadis Redzepi, to the director of the sector for philately Mr. Elez Elezi, to the director of the post office in Ohrid Mr. Sejfula Hani and to the council for philately at the post office of R. Macedonia, with its president Ms. Vasilevska Sonja.

Rare Disease Day Flag under water for New Year, 25 December, 2016, Ohrid, Macedonia

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Climbing the highest mountain in Western Europe – Mont Blank in France in support for rare diseases in Macedonia

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Climbing Korab, 4th of September, 2016

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Skopje Marathon – Running for rare diseases (from 2013 to 2016 and we will continue in 2017)

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Round table on rare cancers, 28th of October, 2016, Skopje, Macedonia with support from Serbia and Bosnia and Herzegovina

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Cooperation with doctors and researchersFIFTH MEETING OF SEE FOR RARE DISEASES, ON 12 NOVEMBER, 2016

The Macedonian Academy for science and art had the opportunity to organize the fifth meeting of SEE for rare diseases, on 12th November, 2016.

In the organizational committee of this meeting are: Momir Polenakovic, President, Zoran Gucev, Secretary, Nada Pop-Jordanova, Ilija Filipche, Zivko Popov, Velibor Tasic,Aspazija Sofijanova, Vesna Aleksovska, Dijana Plaseska Karanfilska

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Cooperation with others and membership in alliances

Internationally are actively participating in the board of directors of the European Gaucher Alliance – EGA, in the Drug Information, Transparency and Access Task Force in EURORDIS, and we are members of several organizations internationally and nationally: European Gaucher Alliance, EURORDIS, International Pompe Alliance, MDS Alliance, International Alliance of Patients Organizations, National Alliance for Rare Diseases of R. Macedonia,  Alliance for patient organizations – APO in Macedonia, an organization that is working on helping patients and families that face cancer. We also cooperate with organizations from the Balkan countries from Serbia, Croatia, Bulgaria, Bosnia and Herzegovina, Albania, Monte Negro, Kosovo, Slovenia.

Why do we think that cooperation is important?

  • Sharing knowledge in patient advocacy.
  • Sharing tools and best practices with patient organizations.
  • Learning how other organizations in the world accomplish their goals.
  • Getting support in policy development.
  • Getting support and new ideas for activities about raising public and institutional awareness about the problems and challenges of the patients and families.
  • Access to workshops, meetings, seminars and training on subjects important for development of strong patient advocates.
  • Access to new information of research and development of new medicines, new policies and new ways to help and support patients

Some pictures from conferences:

Second regional meeting of Gaucher patients and first regional meeting for lysosomal diseases  Sarajevo, Bosnia and Herzegovina,  5-7 April, 2013

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Second Balkan Conference for rare diseases – “Better communication – better treatment“, 20 – 22 April, 2013, Sofia, Bulgaria

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EURORDIS Membership Meeting, May, 2013, Dubrovnik, Croatia

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Patient Meeting Bulgaria – Macedonia, Skopje, 7 September, 2013

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NORBS – National Plan Conference, Belgrade, Serbia, 5-7 December, 2013

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DITA Task Force Meeting (Drug Information, Transparency and Access), London, UK, 8-10 December, 2013

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EUPATI – European patients academy on therapeutic innovation – 2014 – 2015

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Bulgaria – Macedonia Meeting, Kustendil, Bulgaria, 1-3 May, 2015

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Program

Vision

Our vision is achieving the best possible quality of life of patients and families with rare diseases, through best possible social and health services.

 

Mission

Our mission is developing solutions and politics through implementation of activities for improving quality of life of patients and families with rare diseases. The goal of Life With Challenges is to help and support patients and families that face life with rare diseases. Our mission is realized through the following activities:

  • Helping and informing people with rare diseases, creating and sustaining communication between patients
  • Raising awareness in society through education about the problems of patients with rare diseases
  • Organization of public events, congresses and meetings with a goal to educate and inform
  • Support of research and education about rare diseases
  • Organization of info centres for people with rare diseases
  • Organization of cultural events for raising public awareness
  • Distribution and printing of info-materials about rare diseases
  • Social rehabilitation for people with rare diseases
  • Finding funds for treatment of patients
  • Documentation of patients with rare diseases

Important Issues

  • Advocating  for patients’ rights ; Raising awareness in society about rare diseases, about physical and psychological consequences.
  • Helping and informing people with rare diseases.
  • Helping doctors to get information about diagnostics, treatment and rehabilitation of rare diseases.
  • Communication with other organizations about rare diseases in R. Macedonia and in the world.
  • Communication with health institutions in R. Macedonia for better treatment of people with rare diseases.

What are we doing?

  • Negotiating with the Ministry of Health
  • Informing the President of the Government and the Minister of Finance about the importance of treatment for patients with rare diseases
  • Raising awareness to get more support from the people in Macedonia
  • Cooperating with the media to raise the level of awareness about our problems
  • Cooperating with other patient organizations to act together about important patient issues

Rare diseases in the frames of the association

The association of citizens for rare diseases Life With Challenges, is founded by patients and parents that face with life with Gaucher. Later in the association joined patients with Hereditary Angioedema, Allagile Syndrome and

The association is representing patients and parents with rare diseases that are members in the association. At the moment there are over 80 diagnoses of rare diseases represented by the association: Gaucher, Phenylkeotnuria, Allagile Syndrome,  Tyrosinemia, Lenox Gastaut Syndrome, Congenital Muscular Distrophy, Muscular Dystrophy Duchene, Muscular Dystrophy Becker,  Congenital Cataract, Epydermolysis Bulosa, Carnitine plamitolitransferase deficiency, Pulmonary Hypertension, Adrenomyeloneuropathy, Williams Syndrome, RET Syndrome, Amyotropihi lateral sclerosis – Lou Gehrig’s diseases, Myasthenia Gravis , Huntington disease, Porphyria, malignant paraganglioma Pheochromocytoma  tumor, arthogryposis multiplex congenital, Fibrodysplasia ossificans progressiva (FOP), Multiple myeloma, Myelodysplastic syndrome, MPS 4 – Morqio Syndrome,   Strümpell disease – Hereditary spastic paraplegia, Takayasu arteritis, Primary ciliary dyskinesia, Kartagener type, Mastocytosis, Juvenile dermatomyositis, Friedreich ataxia , Acute intermittent porphyria, Cystinuria, Stargart, Lowe Syndrom, Dextocardia Situs inversus, Heurofibramatozis, Phemgus Vulgaris, Wegener’s Granulomatosis, Addison disease, Ehlers – Danhlos Syndrom, Alpha-1-antitrypsin deficiency, Aspergilosis, Erythrodermia Ichthyosiformis Congenital, Autosomal recessive dopa-responsive dystonia Tyrosine Hydroxylase deficiency, Alport Syndrom, Acute trasverse myelitis, Polimiozitis, Adrenogenital syndrome, Mastocitozis, Burgada Syndrom, Fanconi, Niemann Pick C, Chronic inflammatory demyelinating polyneuropathy, West Syndrome, Transverse Myelitis, Retinitis Pigmentosa,  Carney Complex,  Erythrodermia  Ichthyosiformis congenita, Guillain Barreov Sindrom, Malignant Melanoma, Rendu-Osler-Weber disease – hereditary hemorrhagic telangiectasia(HHT), Systemic vasculitis-Sy.Churg-Strauss, Spinal Muscular Atrophy, Barter Syndrome, FAP – Familial Amyloid Polyneuropathy, Pulmonary Fibrosis, Amelogenesis Imperfecta, Achondroplasia, Kabuki syndrome, Fibrin-stabilizing factor deficiency …  and others that will join us and ask for help and support.

Some groups of patients have their own associations and we encourage and support other groups to form associations since we think it is important for each disease to have association or at least a support group.

The association also is a member of the National Alliance for Rare Diseases of R. Macedonia (13 organizations representing different rare diseases and patients rights).  The association does not represent rare diseases that are not registered members in the association.

In Macedonia there are other diagnosed rare diseases. From 2015 there is a register for RD at the Ministry of Health – more about that can be found in the program for RD from 2016 –  Programa za lekuvanje na retki bolesti vo R.M. za 2016. (Translation in English will be available soon)


Regional cooperation

How did we start?

Our organization is founded with the help and support by the National Alliance of people with rare diseases of Bulgaria. The first meeting of families and doctors connected to rare diseases in Macedonia was organized by Bulgaria in Ohrid, Macedonia, in June, 2009.
Since than the patients in Macedonia decided to form their own organization and fight for their rights. This is how Life With Challenges was born.
In the next 3 years we were gathering members and learning how to manage and grow into a strong patient organization.
prv sostanok
Why cooperation?
  • Sharing knowledge in patient advocacy.
  • Sharing tools and best practices with patient organizations.
  • Learning how other organizations in the world accomplish their goals.
  • Getting support in policy development.
  • Getting support and new ideas for activities about raising public and institutional awareness about the problems and challenges of the patients and families.
  • Access to workshops, meetings, seminars and training on subjects important for development of strong patient advocates.
  • Access to new information of research and development of new medicines, new policies and new ways to help and support patients

Meetings for development of regional and international cooperation:

Second regional meeting of Gaucher patients and first regional meeting for lysosomal diseases  Sarajevo, Bosnia and Herzegovina,  5-7 April, 2013

saraevo

Second Balkan Conference for rare diseases – “Better communication – better treatment“, 20 – 22 April, 2013, Sofia, Bulgaria

bugarija

EURORDIS Membership Meeting, May, 2013, Dubrovnik, Croatia

dubrovnik

Patient Meeting Bulgaria – Macedonia, Skopje, 7 September, 2013

bg mk

Congress for rare diseases in South-East Europe, Skopje, Macedonia, 16 November, 2013

see

NORBS – National Plan Conference, Belgrade, Serbia, 5-7 December, 2013

norbs

DITA Task Force Meeting (Drug Information, Transparency and Access), London, UK, 8-10 December, 2013

dita

EUPATI – European patients academy on therapeutic innovation – 2014 – 2015

dita

European Federation of Neurological Associations training course on Pharmaceutical policy, pricing and reimbursement, at London Schools of Economics and political science, 13th to 14th of May, 2014, London, UK

london

EUnetHTA Training course and conference – HTA 2.0 Europe, Teaming up for value, 29th to 31st of October, 2014, Rome, Italy

hta

EURORDIS Membership meeting, 8th of May, 2014, Berlin, Germany

germanija eurordis

Bulgaria – Macedonia Meeting, Kustendil, Bulgaria, 1-3 May, 2015

bg kustendil

Partners for Progress: Patient advocacy in a changing environment, Lisbon, Portugal, 30 June – 1 July, 2015

ppf

The National Alliance for Rare Diseases of R. Macedonia – NARDM

12 organizations are founders of this alliance, in 2014 and we are open to new members that want to join our efforts in providing better quality of life for families that face life with a rare disease.
  • Our vision is providing best possible quality of life for people that face life with a rare disease.
  • Our mission is promoting the principles of equality, solidarity, non- discrimination, information and protection of rights of people with rare diseases in R. Macedonia and internationally.
  • Today NARDM has 13 organizations as members: Association of citizens for rare diseases LIFE WITH CHALLENGES, Bleeding disorder society of R. Macedonia – HEMOLOG, Association for Hereditary Angioedema – HAE Macedonia, Association for rare neurological diseases in children – Kokicnija, Association for hemophilia, Non Government Organization for Rheumatism and Arthritis – NORA, Association for Wilson Disease, Association for Emancipation, Solidarity and Equality of Women – ESE, Association for Pulmonary Hypertension – MOMENT PLUS, Association of citizens for Down Syndrome – Trisomy 21, Association for people with dysfunction, handicap, rare diseases and special needs – Dajte ni krilja, Macedonian Association for Chron and Ulcerative Colitis – MAKUK, Association of citizens for motivation and happier, more productive life of people with physical and mental disabilities – Nova Iskra.
narbm
EURORDIS Membership Meeting, Madrid, Spain, 29 – 30 May, 2015
inrare

Documents for download

Click on the document that you want to download, there are documents in English and Macedonian:

Magazine “Face to Face”, 2015, Rare Disease Day

– licevlice br. 14  In Macedonian language

– Face to Face in English language

Annual report for 2015:

Izvestaj od aktivnosti za 2015

Activity report for 2015

Annual report for 2014:

Activites in 2014 – annual report

Finansiski izvestaj od Centralen registar 2014 – Zivot so predizvici – Financial report from Central register for 2014 – in Macedonian

Brochures from the conferences in March, 2014

Brochure – European regulative and recommendations in the field of rare diseases

Nacionalen plan za retki bolesti – broshura – National plan for rare diseases – Macedonian and English

Brochure from Rare Disease Day – 2014

Брошура – Ден на ретки болести Web – Rare Disease Day 2014 in Macedonian, translated from the rare disease day message and EURORDIS brochure princeps_document-EN

Brochures with patient stories

– Brosura – Prikazni na pacienti – Macedonian Version

– Brochure – Patient Stories – English version / Англиски

Membership Application

–  Пријава за членство – Macedonian, English and Albanian

Informative brochures for rare diseases in Macedonain 

– – Болест на Гоше – Gaucher Disease

– Епидермолисис Булоса – Epydermolysis Bulossa

– Наследна Тирозинемија – Hereditary Tyrosinemia

– Фенилкетонурија – Phenilketonyria

– Хередитарен Ангиоедем – Hereditary Angioedema

– Болеста Помпе – Pompe disease

Laws in R. Macedonia – regarding rare diseases and health

– Програма за лекување на ретки болести во РМ за 2012 година – Македонски

– PROGRAMA ZA LEKUVAWE NA RETKI BOLESTI VO REPUBLIKA MAKEDONIJA ZA 2013 GODINA – Македонски

– ZAKON_ZA_ZDRAVSTVENATA_ZASTITA_PRECISTEN_TEKST, Македонски

Reports and documents of the association

– Activities of Life with Challenges in 2013 – Annual Report 2013

– Official financial report 2013 from central register

– Life with Challenges – report 2012 – Report for 2012, Англиски

– Godisen izvestaj – Zivot so Predizvici – Rerport 2012, Macedonian version

– Статут на Здружението –  Macedonian version

– Do not cry fight for your rights – presentation at Gaucher  Patient Advisory Meeting at Waterford, Ireland, English

– zavrsna smetka 2011 – 2012 – Financial statement in Macedonian – revenues less than 2500 EUR in 2011 and 2012


Membership

Membership is free of charge and voluntary.
Members of the association are the founders, and all members of  the official bodies in the association.
Members of the Association can be Macedonian or foreign citizens, patients with rare diseases, members of families with patients with rare diseases, supporters of the mission, goals and activities of the association.

You can become member in the Association with filling out an application form.
Each members is being informed timely for the activities of the association.

If you want to become our member, please download the application bellow – just click and it will start with download. After you fill it out, send it to  zivotsopredizivici@gmail.com, or info@challenges.mk.

– Prijava-za-clenstvo1 / Membership Application


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