App. 1000 patients ( including 25% adult suffers) plus their families and app. 400 volunteers, care givers, physicians, friends of patients, supporters, parent of patients who passed away

Our main activities:

• National Cystic Fibrosis Week ( for 7 years)
• Life Club CF (motivation programme)
• Publisher MATIO ( 5000 copies- free of charge)
• Financial support for patients (equipment, medications, diet supplements, ?)
• Workshops for adult sufferers and parents
• Conferences for physicians
• Workshops for medical experts and other
• Other education and awareness activities

National Cystic Fibrosis Week (Social campaign about CF organize by us since Seven years) http://www.cfww.org/CFE/matio/7thSC.asp http://www.cfww.org/CFE/2007-02-polish_social_campaign.asp 2008 – EU support this social campaign consultations with medical experts ( by telephone in app. 20 hospitals) Telephone and e-mail information about CF Tens of thousand of information flyers and posters, billboards TV and Radio adv. Internet activity Press Conference about CF and informations for media, Press articles and TV/radio programmes voluntary activities Ocas1sionally postcards, medals and stamps Small workshops with medical experts 2 week photo exhibition in one of the biggest shopping mall in Cracow, presenting the work of CF patients Awareness public opinion poll ( made by Millward Brown SMG/KRC)

http://www.youtube.com/watch?v=en5XWuArWTk

Write to search : Mukowiscydoza
There were seven editions organized which presented the following subjects (for example):
– need of neonatal screening,
– influence of early diagnosis and regular treatment on patients condition.
The needs of Polish CF suffers were also the main subject of all campaignes.

Additional successes of National CF Week, our other activities and activities of Others National neonatal screenig for CF begun in 2007 in Poland

LIFE CLUB CF
( logo Life Club Cf, ZDJĘCIA NAGRODZONYCH ) This is the first motivation program directed to CF people in Europe. The aim of it is to motivate ill patients, especially children to regular drug intake, physiotherapy exercises and medical consultations. It started in November 2004 and participation of every person will take maximum two years. At present 405 patients are taking part in it this gives 40% of CF polish diagnosed people. The patients are collecting points for regular medical and health activities and are receiving attractive awards in return. They have received 200 awards so far

Motivation program directed to CF people
For who: for all CF patients
Participants: now 405 patients
Awards: computers, notebooks, drugs, digital cameras, cell phones, DVD player, mp3 player, toys and other …
Individualization to age and health of participants

Motivation program for CF patients
Aims:
–Increase treatment compliance
–Promote healthy activities
–Decrease treatment rejection
–Increase regular, multidisciplinary outpatient care attendance
Points for pro-healthy activity
Rewards for collected points
Treating physician ? opens & monitors the participation (confirmation of received points)

Result of LIFE CLUB CF (Abstract: CFE/ CFWW Conference, Belek 2007)

• Patients with CF showed an interest in participating in the motivation program LifeClubCF and found it useful
• It resulted in increased frequency of physiotherapist and dietician consultations
• Such program would be especially useful in countries where the complex CF care is yet to be developed
• Further study are in progress

Leonardo da Vinci The pilot project in 2004 — 2 persons trained in UK in cooperation with CF Trust:  – NGO organisation  – care of CF patient in UK 2004 — Foundation MATIO was first NGO in Poland which gain Fund Leonardo da Vinci 2008 Shared knowledge, experience and standards ensure better qualifications and competence 2008 Training at British hospitals in cooperation with CF Trust: 12 persons in 3 groups, 3 weeks intership nurses and physiotherapists from Polish hospitals subject of training: UK standards of CF care sharing experiences

Journal Matio
 —every 3 month (since 1998)
 —distributed to hospitals, medical doctors, CF patients and their families, libraries and volunteers  —journal is free of charge 5000 copies every 3 mounth

Educational CF Workshops Since 2000 vfor parents/caretakers of ill children, protectors and CF adults. The aim of it is to pass the newest knowledge about CF and home care on CF sharing experiences orkshops and training 100-150 parents take a part in it every year.

Publishing the Polish version of „Mallory's 65 Roses” written by Diane Shader Smith

The project Diagnosis — relevant information reached 3000 physicians during 6 months in 2008.
 –Information boards,
 –educational materials and presentations about CF  –3000 physicians during 6 mounth at medical conferences in Poland, in cooperation with physicians.

Medical Conference Cystic Fibrosis - contemporary rules of diagnosis in Krakow First European Cystic Fibrosis Awareness Day - 21 November 2006

Medical — Science Conference, V4-CF Better? Why not? Together we could more in Wieliczka/Krakow
III European Cystic Fibrosis Awareness Day
November 20st – 22nd 2008, www.v4-cf.eu

Cooperation with EURORDIS, The Federation of Polish Patients, CF Europe, CF Worldwide, IFMSA Poland, CF Trust, Slovak CF Association, Klub nemocných cystickou fibrózou, Hungarian Cystic Fibrosis Association, other …

VIII and IX National Polish CF Week was Polish activities of Rare Disease Day 2009 2010

If you want support MATIO activities?

Donation:
http://www.mukowiscydoza.pl/index.php/formularz-wplaty/formularz-wplaty.html (bank transfer on-line)

Or
Bank tranfer (nr IBAN and Swift Foundation MATIO):
IBAN: PL86 1600 1013 0002 0011 6035 0001
BIC/ Swift: PPABPLPK

Did you know Frédéric Chopin might have suffered from mucoviscidosis?
Read more in the MATIO quarterly.
(MATIO Mucoviscidosis quarterly 1(31)/2006)

Frédéric Chopin did not die of tuberculosis. The first doubts appeared during the composer?s postmortem examination. It can be ultimately proven by genetic tests of Chopin?s heart.
Notes from Chopin?s postmortem examination indicate, that the surface of his heart was covered with number of nodules. However, it was not a symptom of tuberculosis. The latest results of professor Wojciech Cichy?s (Poznan University of Medical Sciences) research suggest, that these could have been symptoms of cystic fibrosis rather than tuberculosis. Other symptoms include: barrel-chest deformity, clubbing of composer?s fingers and the fact that Chopin did not have any children (he was probably infertile). Some of the Chopin?s biographers suggest that asthma might have been a cause of his death. Nevertheless there are a few facts supporting the idea of cystic fibrosis being Chopin?s illness. One of them is the fact that two out of three Chopin?s sisters died of lungs diseases. What is more, the youngest one, Emily, who was unusually sickly and weak, died when she was only 15.
Mucoviscidosis is one of the most common genetic illnesses. Genetic sample for comparison will be obtained from Chopin sister?s corpse. She was buried on Powązki cemetery in Warsaw .