News/Press Releases

Category Archives

Additional third dose vaccine for COVID 19 for rare diseases

Press release from EURORDIS

The rare disease community calls for additional doses of the COVID-19 vaccine to protect the most vulnerable and extra measures to vaccinate more European citizens

13 October 2021, Paris – EURORDIS-Rare Diseases Europe is calling on national policymakers to consider a booster
doses for people whose immune systems have not fully responded to the initial vaccination, including people living with a rare disease, and additional measures to encourage more citizens to get vaccinated against COVID-19.

People with moderate or severe primary immunodeficiency, including many transplant recipients, dialysis patients,
people living with cancer and some rare diseases, may not build the same level of immunity to the two-dose vaccines
compared to those who are not immunocompromised.

In this regard, it is crucial that a third or even a fourth dose of the COVID-19 vaccine, when appropriate, be regarded
by all national authorities across Europe as an extension of the primary vaccination course for people with weakened
immune systems. Even though some countries have already put such a system in place, EURORDIS expresses
concerns that too few benefited from this measure.

Consideration for an additional dose of the COVID-19 vaccine should also be given to carers and health care providers in direct contact with people with moderate or severe immune conditions. For patients who remain vulnerable to the virus after the third or fourth doses, EURORDIS urges health authorities to consider the administration of monoclonal antibodies as pre-exposure or post-exposure prophylaxis, as has already been decided in some countries on a compassionate basis, pending the final evaluation of evidence. This, however, should not affect EU countries’ commitment to donate 200 million doses of vaccines to COVAX and AVAT.

With epidemiological models, estimating a winter surge in Europe by December 2021, accelerating the daily pace of
primary vaccinations is of particular importance. A high proportion of vaccination in the general population would
constitute solid protection for those who respond less to vaccines or cannot be vaccinated. More than 63 percent of Europeans have been vaccinated against COVID-19, making the EU one of the global leaders in vaccination coverage. However, when taking a closer look, most of Eastern Europe is clearly lagging far behind, with five countries having less than 40% of their population fully protected.

As the Delta variant is now circulating at a high speed in the region, an increase in intensive care bed occupancy and COVID-19 related mortality as well as mobility restrictions in the EU can be experienced as early as January 2022. This could only further the East-West divide and undermine the hard-earned progress. While the EU distribution mechanism continues to function and to deliver doses needed, the demand side is lacking.

There is an urgent need for EU countries, especially those countries falling behind with the primary vaccination course, to revise their approach to vaccination, taking extra measures to encourage more people to get vaccinated to close the East-West vaccination gap and bring the pandemic down. Countries across the continent should work together, sharing best practices and providing doses of COVID-19 vaccine to those in need.

Considering the increasing contagiousness of the virus, we need to ensure that all Europeans are protected,
regardless of where they live. European countries, collectively, need to provide additional doses to those at high risk of severe COVID-19, all the while accelerating the vaccine rollout and sharing doses with countries facing barriers to accessing vaccines.

Reference list:

Benedikt S et al., Hemodialysis Patients Show a Highly Diminished Antibody Response after COVID-19 mRNA
Vaccination Compared to Healthy Controls, medRxiv 2021.03.26.21254259; doi:
Boyarsky BJ, Werbel WA, Avery RK, et al. Immunogenicity of a Single Dose of SARS-CoV-2 Messenger RNA Vaccine
in Solid Organ Transplant Recipients. JAMA. Published online March 15, 2021.doi:10.1001/jama.2021.4385
Boyarski BJ et al., Antibody response to a single dose of SARS-CoV-2 mRNA vaccine in patients with rheumatic and
musculoskeletal diseases Free. ttp://

EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 974 rare disease patient organizations from 74
countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.
By connecting patients, families, and patient groups, as well as by bringing together all stakeholders and mobilizing
the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies, and patient
services. Follow @eurordis or see the EURORDIS Facebook page. For more information, visit

Rare diseases
The European Union considers a disease as rare when it affects less than 1 in 2,000 citizens. Over 6,000 different rare diseases have been identified to date, affecting an estimated 30 million people in Europe and 300 million worldwide. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offering is inadequate, and research is limited. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment, and the benefits of research.

International Gaucher Day

This year we focus on the theme of Early diagnosis, better lives as set by the International Gaucher Alliance –


International neonatal screening day

Today is International newborn screening day. Today is also PKU day. This is why today we have to remind the public and the institutions that in North Macedonia, screening for PKU and other metabolic diseases is only partially available, not for all newborn babies.

PKU is a disease that is mandatorily screened in many countries in the world. North Macedonia is the only country in the region that does this screening only for 2000 to 4000 babies (20 000 are born during the year). The number usually depends on the financial situation of the program for screening at the Ministry of Health.

Since the disease is not discovered at birth, but at 2 months, 6 months, and sometimes in a year or 2, the situation is not good. Children with PKU who are not discovered at birth have mental and physical problems during their life. This is why it is important to screen for PKU. To provide a normal life for children with PKU and their families.

In this post we include the translated principles for newborn screening for rare diseases from EURORDIS:

Начела за скрининг на новороденчиња

More information about PKU in Macedonian language are available here:

Брошура за фенилкетонурија

More information on International PKU day:

International PKU Day – June 28th

Poetry race in Struga

At the poetry race in Struga, on 23rd of May, 2021, some participants were running for equity for rare diseases.

Our volunteers shared informative and educative materials for rare diseases at the event to raise awareness for rare diseases in North Macedonia.

COVID 19 vaccination for rare diseases

Dear patients and families

Adult patients and parents of children with rare diseases can be vaccinated in Boris Trajkovski in Skopje. They have a list from the register of rare diseases from the Ministry of Health.

To prove you are a patient or a parent you need a document where the disease is mentioned (like a report from the hospital, specialists, genetic test, or other). The document does not have to be new.

Also please have a document for identification.

do not go early in the morning as it is more crowded so please go after 10 in the morning.

Vaccination is not mandatory it is your choice.

More information on COVID 19 and vaccination of rare disease patients can be found on the resource page of EURORDIS on the following link –


Rare disease day in Bitola 2021

In Bitola LIFE WITH CHALLENGES, organized different activities with the help of Hepar center Bitola, Interact club Bitola, gymnasium Josip Broz Tito Bitola and the municipality of Bitola. Many other schools and individuals joined in the activities for support of rare diseases.

Coloring hands, telling stories, sharing information in Bitola

Activities in the center of the city – sharing colored paper hands

Illumination of the municipality building in Bitola

Educative discussion on rare diseases, and stories from patients from Bitola


Kliment Ohridski and Joisp Broz Tito in Bitola
Les bons amis t’aident à retrouver ton sourire, ton espoir et ton courage.
Ogni bambino ha diritto di essere sano.
Rêver seul ne reste qu’un rêve ! Rêver ensemble devient la réalité.
Qui est en bonne santé, est riche sans le savoir.
L’amore vince tutto!
Etre rare, c’est être fort. !

Todor Angjeleski school in Bitola

All activities of LIFE WITH CHALLENGES are supported by:

Rare disease day Skopje, 2021

Promotion of postal stamps for rare diseases in Skopje. Together with the Post from North Macedonia we organized the promotion of the third rare disease postal stamp. The first one was for children with rare diseases, the second for Alport syndrome, and the third for Gaucher disease. This is initiative of Gordana Loleska.
We participated in lectures organized by Macedonian Medicine Student Association dedicated to rare diseases.
School pop Georgiev Berovski – Hrom, Skopje.
Rare disease day with MPS 4 child at his school

All activities of LIFE WITH CHALLENGES are supported by:

Rare disease day in the media, 2021

Alsat Tv show on health/ Алсат емисија за здравје

Additional links to media announcemtns:



Rare disease day in Ohrid, 2021

In Ohrid with the support of the municipality and a lot of friends and companies, Gordana Loleska organized a lot of activities in support of rare diseases.

Illumination of the SAmoil fortress, 28 days in February in support of rare disease families


illumination of  the city library Grigor Prlichev in Ohrid

Schoold Debrca

A song for rare diseases


5 to 12 initiative, Ohrid

Cyril and Methodius School, Ohrid

Additional events in Ohrid and Struga are available at the following Facebook links:

All activities of LIFE WITH CHALLENGES are supported by:

Support from institutions on RDD 2021

The president of North Macedonia
The president posted a picture for RDD with his family in support of rare disease families and they also illuminated their house in RDD colors.
More than 600 families live with a rare disease in our country. We need to help them by cooperating and support them in their requests for a better quality of life.
Pothuajse 600 persona në vend jetojnë me ndonjë sëmundje të rrallë.
Bashkëpunimi midis nesh të gjithëve është i rëndësishëm që t’i ndihmojmë për një jetë më të mirë. Të japim dorën dhe të dëshmojmë se nuk janë vetë.
Government of North Macedonia
The Prime Minsiter Zoran Zaev and the Minister of Health Venko Filipche, had a meeting with the associations for rare diseases. They stated that for rare diseases we need a systematic approach and they will continue to increase the number of available medicines for rare diseases. In 2017 the budget for rare diseases was 213 million MKD, today it is 527 million MKD.
Further the plan is to adopt a national strategy for rare diseases which will mean progress in the laws according to the EU regulatives for rare diseases and it will support the education of medical professionals in our country.
Minister of health of North Macedonia, Venko Filpche  Венко Филипче
People with rare diseases are not alone. The ministry of health is always open to hear about the problems and to follow the new approach and access to treatment and care. With the increase of the budget, we increased the treatment for different diagnoses. In 3 years we managed to get 9 new medicines and there are 560 patients in the registry developed by the commission for rare diseases. With the national strategy for rare diseases, we will continue to improve the lives of families with rare diseases.  #ShowYourRareShowYouCare#РеткиСме
The First Lady of North Macedonia, Ms Elizabeta Gjorgievska 
Our First Lady organized an expert discussion for improvement of health and social services for families with rare diseases, together with doctors, researchers, psychologists, and ministry representatives.
Patients with rare diseases and their families are example for courage and hope. We have a lot of work to do, so that we can offer equity in social and health care for them.
This is not something we need to do only for RDD, every day we need to advocate for a systemic approach to treatment, care, and diagnosis. We should not allow rare diseases to be marginalized and isolated. They have the potential to contribute to our society and we need to give them a chance to participate in the improvement of health and social care.
Minister of labor and social policy, Ms Jagoda Shapapaska 
For RDD I want to say that the life of people with rare diseases and their families whould not be defined by their diseases. Social reform should offer systemic support for people with rare diseases. As a ministry for labor and social policy we have 2 priorities:
– Provision of quality social protection and services for people with rare diseases and their families
– development and practice of holistic approach in the treatment of people for rare diseases and support for their families.

Page 1 of 11123...Last


Contact us

Sending your message...