Report from a very successful national march for CF in Macedonia
08-03-2011
65 roses, 65 reasons to fight cystic fibrosis was one of most used titles in the headlines in newspapers and on national TV news.
Political awareness campaign
65 roses were given to the ladies who are working at the Ministry of Health, Health Insurance Fund and  Women Parliamentarians’ Club of Macedonia as a symbolic word to say thank you to all of you who were active in the helping process for improving the quality of a treatment and a life for the CF patients and as appeal to the others to be more active in this process, too. But at the same time we gave them copy of the CF Declaration-Dubrovnik and a CF flyer and a CF brochure from CFE.
You can see the pictures and flyer design on our www.cf.mk and even more on our facebook profile (please become our friend!)
The 8th of March was chosen as a day of the woman emancipation and the roses as a kind of symbol of this day as well as a symbol for many CF associations and foundations through the world.
We were giving roses for cystic fibrosis. We tried to raise the public awareness for this most common genetic disorder. Once again we spoke about most ordinary symptoms that pediatricians should be aware of  if noticed in a child and also spoke about the problems that CF patients are facing in the country which actually are:
- no adequate hospital facilities,
- no regular IV therapy as well as no regular therapy for all patients who need to have  colistin, tobramicine and pulmozyme or no therapy at all for some of them,
- no educated physiotherapist (actually no physiotherapist at all).
We also mentioned the need for :
- an Adult CF Center to be considered in future
- antifungal and anti-MRSA drugs to be recognized and also available for free for the CF patients
- Â the European Standards of CF Care to be implemented in Macedonia
- an official Register of the CF patients.
We gave them the unofficial number of about 110 CF patients and asked everybody to help the process of reaching the European average surveillance age because geographically we are Europe, too.
We also presented the part of the document:
“Closing the Gap in Cystic Fibrosis Health Outcomes and Survival for all Patients within Europe”
Meeting of members of the European Parliament and the European Commission
with CF patients and experts from across Europe
There is…a shocking disparity in number of patients and age at death between older and newer EU member states, independent of population sizes and underlying gene frequencies for CF. This gap can most likely be explained by the tragic fact that the majority of children born with CF in these new EU countries die in early childhood due to a lack of access to appropriate diagnosis and healthcare. This gap is especially painful given affordability of care and the recent scientific progress which promises curative treatments of CF.
Public awareness thanks to March and popconcert
We have been supported from the 2 pop singer icons, Dani and Lambe. They were with us on this March and were giving roses to the women, but also performed a 2 hour free of charge concert for us with Darko Iliev, another popsinger after the march in the cafĂ© bar on the main street in the city center. We managed to provide T-shirts with the logo of the association and flyers for the very first time, all free of charge from the different human people who liked the idea we presented them. Â
We pronounced this event on our facebook page and many VIPs, e.g. actors, singers…, gave us their  support!
Valuable collaboration and support
We were fully supported from the employees in a CF Center together with Dr. Fustik.
Also we asked and got a support from 16 other different profiled health associations e.g for cardiovascular problems, for nefro problems…etc.
And, last but not least, we got support from the primary school children of “Kole Nedelkovski”. With their teachers they made cards and origami flowers for CF children hospitalized to make their days brighter and to have flowers to give their mums for the 8-th of March. You can also see these on the website and the facebook page.
The Element PR house helped us to organize all this for free. Their motivation was: “We are all woman working here, some of us are already mothers, the others will be in near future. We fully support your fight for saving your children life.”
And the most important benefit which came from all of this is the Interest and promise for collaboration we got from the Women Parliamentarians’ Club.
Also the Red Cross organization from Macedonia showed interest to collaborate with us in future.
CF Macedonia
