For the fourth time CF Europe organises the South Eastern CF Conference. This year the conference will take place in Belgrade from 24 to 26 October 2013.
The aim of the conference is to:
Enhance knowledge about Cystic Fibrosis (about the disease, curative and preventive treatment and organization of quality care according to European standards of care) in order to improve CF care in the region.
Build networks of people who care for people with CF: between patients (associations) and health professionals, across disciplines (allied health, psychosocial, medical) and across borders.
Capacity building, awareness and lobbying for better access to care: we want to ensure that a larger number of patients get access to the right diagnosis, care and medication through workshops for patient representatives, patients/families and professionals and contacts with authorities.
You can find a preliminary program for this conference by visiting CFE website here
Workplace Health Practices for Employees with Chronic Illness: Conference on Promoting Workplace Health
Each year CF Europe organizes a European CF Awareness Week in the week of 21 November, aiming at raising awareness about the needs of people with CF and their families in Europe and lobbying for access to quality care around Europe. This year we invite all countries to organize awareness activities in their countries. Next year we will host a major EU and European campaign.
For the first time, CF Worldwide will organize a Global awareness event
With the support of the Cystic Fibrosis Worldwide network of member countries and global contacts, CFW will host the first Worldwide Cystic Fibrosis (CF) Day on 8 September 2013. CFWW developed promotional materials and invite people to host events in their countries, raise funds to support their local CF organization, and spread awareness. You can learn more by visiting www.worldwidecfday.
For more information about European CF Week 2012, which will take place between November 17 and 25, please visit cf-europe.eu
For more information about European CF Week 2012, which will take place between November 17 and 25, please visit cf-europe.eu
The Turkish CF association is organizing a surprise event on the worldwide CF day, September 8, 2013.
Many people with cystic fibrosis are susceptible to infections that are easily spread between people with CF. It’s not a great idea then to invite hundreds of people with CF to a stuffy community centre miles away to sit in a cramped room and share those bugs. That’s why CF Unite exists – to provide a way of getting together to discuss the most cutting edge CF research and inform the direction of future studies.
CF Unite brings the people that matter most – people with CF, parents of children with CF, CF clinicians and CF researchers – together all in one place, without sharing the same space. No worry of infection. That, and we don’t have to sweep up and stack the chairs afterwards either.
People in Barnet are being asked to get bouncing to raise money for a cystic fibrosis charity.
The Cystic Fibrosis Trust has teamed up with trampolining campaign group Get Britain Bouncing to encourage one million people in Britain to take to their trampolines on June 27 and raise money for sufferers of the life-shortening genetic disorder.
People who take part in National Get Britain Bouncing Day are encouraged to use their mobile phones to donate £1 to the Cystic Fibrosis Trust. The money will go towards research in finding better treatments and a cure for the disease.
Sue Piper of the Cystic Fibrosis Trust said: “Children who have cystic fibrosis often use trampolines as a fun way to help them do their daily physiotherapy.
“We hope as many people from Barnet as possible sign up for National Get Britain Bouncing Day and the organisation reaches its goal of getting one million people bouncing.”
To sign up for the event and for further information, visit getbritainbouncing.org.uk.
AbbVie announced that undergraduate and graduate students living with cystic fibrosis (CF) can now apply for the AbbVie CF Scholarship for the 2013-2014 academic school year.
Previously known as the CFCareForward Scholarship, the AbbVie CF Scholarship was established 21 years ago to honor young adults with CF as they pursue goals of higher education. In 2013, forty students will be awarded $2,500 each based on outstanding academic record, extracurricular activities and creativity. Applications will be accepted through Friday, June 14.
"AbbVie is proud to be able to provide this scholarship to exceptional students living with CF," said Jim Hynd, divisional vice president, Cardiovascular Care, Metabolics and GI Care, AbbVie. "For more than 20 years, we have been inspired by the CF scholars who continually demonstrate that it is possible to achieve personal and academic success while living with a chronic disease."
Later this year, in honor of the 21st year of the scholarship program, the forty AbbVie CF Scholarship recipients will have the opportunity to compete for one of two Thriving Student Scholarships (based on level of study) resulting in a total scholarship award of $21,000 each.
It is not necessary for scholarship applicants to have taken, currently take, or intend to take in the future, any medicine or product marketed by AbbVie and this is not a consideration in the selection criteria. More information about the AbbVie CF Scholarship criteria and application can be found at www.AbbVieCFScholarship.com.
AbbVie is a global, research-based biopharmaceutical company formed in 2013 following separation from Abbott. The company's mission is to use its expertise, dedicated people and unique approach to innovation to develop and market advanced therapies that address some of the world's most complex and serious diseases. In 2013, AbbVie employs approximately 21,000 people worldwide and markets medicines in more than 170 countries. For further information on the company and its people, portfolio and commitments, please visit www.abbvie.com.
A number of clinical trials will be recruiting shortly to include eligible CF adults with the following genotypes:
ΔF508 / ΔF508
ΔF508 / other
R117H / other
These trials are looking to improve the function of the CFTR protein with oral drugs. All involve a placebo (‘dummy drug’) arm:
1. Ivacaftor (Kalydeco) in patients with R117H - six-month trial followed by open label (no placebo) extension phase. Starting later in 2013.
2. Ivacaftor (Kalydeco) in combination with another agent:
a. 661: total trial period three months; one month on drug. No
extension phase. Patients with one or two copies of ΔF508.
b. 809: six-month trial leading to open label (no placebo) extension
phase. Patients with two copies of ΔF508. Starting later in 2013.
Each trial will have specific instructions on who can be recruited including factors such as age, lung function and other medication taken. So some people may be eligible for more than one of these trials. The important thing is to contact us to find out if you fit the criteria.
If you are interested in learning more, please speak to your CF consultants in clinic or contact Sandra & Myril via hospital switchboard (bleep 0021) or email: firstname.lastname@example.org or email@example.com.
This years’ CF-conference from CFE will take place in Lisbon on 11 & 12 June 2013.
On this occasion CFE organizes its General Assembly (on Tuesday 11 June) but the organization also offers a workshop on ‘high impact patient advocacy’ and a joint symposium on adult care together with ECFS (both on Wednesday 12 June) and a Family Conference on Saturday 15 June.
Please find in the PDF the overview of the meetings that will take place in Lisbon.
Three friends are soon leaving for a journey through Europe to create awareness about organ donation. Two of them will be ‘chained’ to each other at the wrist with a rope a little less than 1 meter long for the entire trip! Their goal is to convince students to sign up as organ donors and collect money for the cause by engaging in different challenges along their journey.
Their motto? “In life you can face some difficult challenges, but saving lives is easy! It only takes 1 signature to register as a donor. We want to convince as many people as possible of this, and that is why we have started our own big challenge”
After their studies in commercial engineering at the university in Leuven, Linde and Ruben moved to Genève where they live and work together. As students they were both engaged in different social organizations and also now, as "working people" they want to contribute. It is for this reason they started the "connect4life" campaign, in favor of organ donation, in collaboration with "Reborn to be Alive" and "Aidons.be".
For 10 consecutive days, from May 8th to the 17th, 2013, Linde and Ruben will chain their wrists and travel through Europe. The chain may not be removed at any time. Along the way they will face some smaller challenges to raise money from sponsors for their cause. Lionel, a photographer who will be traveling with them, will share images of the trip and their adventures on Facebook. Together with "Reborn to be Alive" they have organised an offline registration week for organ donors (May 13th-17th) in Leuven. They will try to motivate as many people as possible to register as organ donors "on the spot". Together, their goal is to reach 500 new registrations that week.
The ballot results for the 2013 Virgin London Marathon are out, and the countdown has begun for thousands of runners taking part in the iconic race on 21 April 2013.
If you or anyone you know has got a ballot place, please use it to run for the Cystic Fibrosis Trust and raise whatever you can.
If you applied but didn’t get a place, you may still be in with a chance through your Running Club.
Team CF offers support and encouragement at every stage, starting with an invite to our online interactive training zone. You will receive a fundraising pack, newsletters and e-newsletters, a running top, and rousing encouragement from our kerbside cheer team on the day. After the race you can enjoy our post-run hospitality, complete with masseurs!
Join us for one the most memorable days of your life.
Clare Beatson, her partner Leigh Brennan and his football club, Rupertswood, are holding a party to raise funds for the Royal Children's Cystic Fibrosis Research Trust (RCCFRT).
Ms Beatson, 28, was diagnosed with the life-threatening genetic disorder that affected her lung function and digestion when she was just two.
The cocktail-style night will involve live and silent auctions, raffles, a reverse ipod shuffle draw and live entertainment.
Items up for grabs in the auction include AFL jumpers or footballs signed by the Western Bulldogs team, Greater Western Sydney player and former Macedon player Lachie Plowman, Essendon's James Hird and Jobe Watson.
The couple said they were still looking for donations, including items to auction, to raise more than last year's total of $5200.
The cocktail night will follow the round two Riddell District Football League Rupertwood vs Macedon clash. The Macedon Football Club supports the fund-raiser.
The event, called 'Round 2 2013', is on April 20 from 7pm in the Rupertswood clubrooms with tickets costing $20.
Details: Leigh, 0404 145 567, or Clare, 0450 082 551. Trust donations can be made on the night or on the RCCFRT website, rccfrt.org
The 7th European CF Young Investigator Meeting will take place in Paris from February 27th to March 1st 2013.
This scientific meeting is organized by the European cystic fibrosis patients’ organizations together with the European Cystic Fibrosis Society. It aims at fostering interactions between young scientists in order to create a long-term collaborative European network of CF investigators. The meeting will cover all CF research fields, considering basic research and clinical research.
Everyone involved in CF studies is invited to participate!
There is no registration fee. Travelling costs, housing and meals will be covered by the organizers.
We strongly recommend young investigators from your laboratory or hospital to apply for this meeting, which intends to become a major regular event in the CF scientific community.
The Italian Cystic Fibrosis Research Foundation (FFC) funds research projects, from basic to clinical, that have the ultimate aim to treat and eventually cure cystic fibrosis (CF). Multicentre study applications combining different expertises in one project have a higher priority for this call only if there is convincing prospect that the total output will be greater than the sum of the parts. Other things being equal, research proposals in which translational objectives are clearly described and documented will be given priority. Accordingly, research projects dealing with either clinical studies or pre-clinical studies exploiting animal models of CF are strongly encouraged and will be considered with priority, also in relationship to their proximity to cure.
1. Pathophysiology of the basic defect in cystic fibrosis and pharmacological approaches designed to correct or compensate for the deficiency of functional CFTR.
2. Advanced studies in the molecular genetics of CF.
3. Innovative anti-microbial strategies for CF lung infections with potential clinical applicability.
4. New approaches to understand and treat inflammation in CF.
5. Survey, revision and improvement of current key-strategies in CF prevention, diagnosis, therapy and care programmes, including carrier screening, clinical trials, epidemiological studies and systematic reviews.
Your application should be sent by 15 February 2013.
Romania Cystic Fibrosis Association (RCFA), in collaboration with Houston NPA, is organizing on 17 and 18 November 2012 the Annual Conference of RCFA (3rd edition). The conference will be held in Bucharest at Ibis Hotel Palatul Parlamentului.
The conference is dedicated to patients with cystic fibrosis (mucoviscidosis), to their families, but also to any person who wants to learn more about this disease and its treatment. Issues covered in this conference are varied and are of great significance for patients with cystic fibrosis (mucoviscidosis): nutrition in CF, pulmonary disease, infection control, physiotherapy, news in CF, adult patient issues in Romania, patients' rights.
More details could be found on http://afcr.ro/conferinta-2012/.
On October 18th and 19th CFE and CF Turkey organize the 3rd South Eastern European CF Conference in Istanbul, Turkey. Find the program and information on how to register.
On both days there will be a medical program with national and international speakers from different backgrounds and fields of expertise. On Thursday October 18th there is also a lay-program.
On Friday October 19th CFE organizes a patients’ representative meeting. During this meeting patients, families and other stakeholders will have the possibility to take part in an interactive session on ‘living with CF’ with a physiotherapist, a nurse but also parents of adolescents with CF, an adult with CF and representatives of patient organisations. Find the program and information on how to register attached at the end of this article.
This conference aims to:
"Bubbles Week is the Cystic Fibrosis Association's theme for 2012 Awareness Week, when we aim to raise recognition, awareness and understanding of this genetic condition.
Cystic Fibrosis (CF) affects over 500 people and their families in New Zealand, and as it is classified as a rare disorder the Association gets very little funding from the government.
The Cystic Fibrosis Association aims to raise awareness of the condition and to raise funds to further the Association's objectives: to provide support (welfare assistance, fieldworkers, grants & scholarships), education, communication, advocacy and research. "
Bubbles Week runs from August 13 to 19, 2012.
The 35th ECFS Conference will take place in Dublin, Ireland 6-9 June 2012.
Please, see here the downloadable program and discover all the things we will be doing those two days. You are still on time to join us. It is impossible to enter the conference building if you are not registered for the ECFS conference, so do not hesitate it and do it from here!
The 6th European CF Young Investigator Meeting will take place in Paris (France) from the 24th to the 27th of April 2012. This scientific meeting is organized by the European cystic fibrosis patients’ organizations together with the European Cystic Fibrosis Society. It aims at fostering interactions between young scientists in order to create a long-term collaborative European network of CF investigators. The meeting will cover all CF research fields, considering basic research and clinical research.
Fifty young investigators (under 35 years old) will be selected by an international scientific committee to present their work on CF. They will be asked to give a 10 minutes’ talk and to present their results on a poster for further discussion. Senior scientists will moderate the different work sessions. Large time periods will be dedicated to networking. The scientific committee will reward the best presentation (talk + poster). This meeting provides a unique opportunity for young scientists to train themselves and share experience. Moreover, leading scientists will give state of the art lectures in microbiology, immunology, cell biology, gene therapy, and clinical issues in CF.
The organizing committee will also offer a training course on “Presenting in English with confidence”.
There is no registration fee. Travelling, housing and meals will be covered by the organizers.
Due to your involvement in CF research, we strongly recommend young investigators from your laboratory or hospital to apply for this meeting, which intends to become a major regular event in the CF scientific community.
For application, please return the given abstract form to Virginie Jaunet (firstname.lastname@example.org ) and a copy to the Belgian association (email@example.com) by December 9th 2011. Acceptance will be notified at the end of January 2012. Further information about the meeting will be provided to selected young investigators.
We are looking forward to receiving your young investigators’ application.
The 3rd European CF Awareness week
From 21 to 27 November 2011, CF Europe and patient associations in 39 European countries organize the 3rd European CF Awareness Week, to fight for better and longer lives for all people living with CF.