ICCCPO Newsletter  2009 - No 1

 

 

Index

Message from the Chair

Global news
Children’s Cancer Day in Croatia
New websites for Eastern Europe
Donations to LÖSEV are transformed into gold
A last wish for Donna
Noujoum joins ICCCPO
News from Nepal
India celebrates National Cancer Rose Day
Peppers
Interactive CDs for young people with cancer
Scholarships for cancer survivors in Alberta, Canada
Care to Wear web shop
Survivors

International Childhood Cancer Survivor Network (ICCSN):  Contact Report

Our Survivor Group in Mainz
Medical and related
Acute lymphoblastic leukaemia protocols in the Netherlands
Setting up the new European Paediatric Hodgkin Network
International Children’s Palliative Care Network launches a Charter of Rights
Introducing the new SIOP Europe website
Guidelines for the pharmaceutical development of medicines for paediatric use
 
For details of future meetings and conferences, go here.  
For contact details of the ICCCPO Executive Committee, click here

 

 

Articles in the original newsletter that are now separate

Title

Author

Link

Report from the 40th Congress of the International Society of Paediatric Oncology Sarah Talbot-Williams Go
The challenges of a shared-care system Corry van den Hoed-Heerschop Go
The importance of cancer registries Gerlind Bode Go
The care needs of adolescents with cancer Luisa M. Massimo & G. Gaslini Go

 


Message from the Chair

I am sure everyone agrees that the death of Geoff Thaxter, our late Chair, is a great loss to ICCCPO and WCCF. Geoff’s dedication to families of children with cancer will always be remembered.

In early October we had a highly successful ICCCPO conference in Berlin, in conjunction with the SIOP annual congress. It was an excellent opportunity for members and friends to share ideas and enjoy the atmosphere of the ICCCPO family. I would like to thank everyone who contributed, including Professor Guenther Henze, Gerlind Bode, Prudence Walker-Cuttance, Alexandra Browsdon, Dorothee Schmid, Maren Boesel, and Chrissy Randall. Last but not least, co-chairs Anders Wollmen and Anita Keinesberger. 

ICCCPO membership has grown again this year. We now have 118 members from 73 countries, including new members Chile, Ethiopia, Ghana, Nepal, Syria, Tonga, Trinidad & Tobago, and Zimbabwe. I would like to welcome them all and convey my gratitude to those who keep working hard to nurture new groups and recruit new members. This enables ICCCPO to give a strong voice to families and parent organisations throughout the world.

While the organisation is growing, we have kept our focus on our mission: to improve access to the best possible treatment and care for children with cancer everywhere in the world. These are our major goals for the coming year:

• To foster a "we care" and "we share" culture

• To strengthen our continental and regional work

• To ensure continuity of ICCCPO

• To build on our advocacy and external relationships

• To keep developing the World Child Cancer Foundation (WCCF).

We are collaborating with SIOP in a therapeutic alliance to speak about the needs and inequality around the world. While we build a network of continental and regional representatives, we look forward to working more closely with SIOP Africa, Asia and Europe, and SLAOP.

The development of WCCF will be essential for ICCCPO's further progress. WCCF will start funding two projects shortly. Having some successful cases is vital for further international public fundraising, but it will take time.

Together we can make WCCF a strong organisation that makes a real difference to the families of children with cancer in developing countries. If you would like to make a donation to WCCF, please contact Jo Hopkins (jo.hopkins@worldccf.org), Director of Fundraising, or Marianne Naafs-Wilstra (wccf@vokk.nl), Trustee of WCCF & Secretariat of ICCCPO.

Lastly, I would like to thank Julian Cutland, who has stepped down after 7 years serving the Board. Julian has made an outstanding contribution to the organisation, and his recent work on the Childhood Cancer Foundation Manual has been much appreciated.

Benson Pau, Chair

PS: The ICCCPO Board would like to congratulate Poonam Bagai on receiving the Indira Gandhi Priyadarshini Award 2008. This recognises her extraordinary and highly appreciated work for the families of childhood cancer in India.

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Children’s Cancer Day in Croatia

We want to inform you about activities that we arranged around Children’s Cancer Day.

We organized the first Croatian Meeting of Young People Cured of Cancer. About 50 young people from all over Croatia gathered in Split. It was beautiful. We talked to members of our government about the problems young people may have after their therapy. The media also attended the meeting so Croatians could hear what the young people had to say. They were very happy and pleased to know that someone cares about their problems.

“Sanus” Split, Croatia

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New websites for Eastern Europe

We’d like to tell you about a new website at www.kids-cancer.info which provides information about local and national parent groups and local hospitals in the countries of former Yugoslavia. There are still some details to be tidied up, but in the meantime the groups and hospitals will be delighted to receive helpful comments and suggestions for improving the site.

In Romania, the PAVEL team has also created a new website at www.asociatiapavel.ro to celebrate the first year of the Centre for Resources and Services for Children and Young People with Cancer and their Families. They were able to create the website as a result of the project they won in the ‘My Child Matters’ competition.  The site is in both Romanian and English, and they welcome contributions and useful articles for and from cancer patients, families, doctors, nurses and psychologists.

Irina Ban, Olga Cridland and the PAVEL team

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Donations to LÖSEV are transformed into gold

The children of Turkey triumph at the Oncology Olympics.

Our sorrow after the Beijing Olympics was transformed into joy thanks to all the first places the LÖSEV children achieved at the 2nd Oncology Olympics organized by the Orimari Foundation in Warsaw, Poland.

We felt so proud of the great successes of our children, who couldn’t suppress their tears of excitement as they won 3 golds in the 3 disciplines in which they competed.

This brought great joy and happiness to our country. After their own triumph against the disease, they now raised our flag to celebrate a triumph for our country.

550 children participated in the Olympics, which were organized by the Orimari Foundation. The 8 countries taking part were Hungary, Russia, Poland, Germany, Czech Republic, Slovakia, Ukraine and Turkey.

8 children from LÖSEV, aged between 13 and 17, took part in the Oncology Olympics, and their success and determination brought joyful tears to everyone.  Ceren Gökdemýr took first place in swimming and Sadýk Ahmet Güneþ in ping pong. Our soccer team, consisting of Kadir Kaya, Ozan Kurban, Halil Ýbrahim Akgül, Sezer Dÿkmen, Uður Yürek and M. Akýn Aras, also won all 3 matches they played, and took the gold medal.

Before returning to Turkey, the LÖSEV delegation visited Turkey’s Ambassador in Warsaw, His Excellency Reþit Uman, at his residence.

Nazli MUDUROGLU & Fulya YAVUZ International Relations, Lösev

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A last wish for Donna

A beautiful young girl made three very special wishes. She left them in a little RED BOX for her young soldier Husband, and Mum & Dad, after she died on New Years Day 1996.  Donna Curtis had just turned 20. Donna spent her last four years fighting cancer.

In that time Donna saw the suffering of many terminally ill children, and vowed her instructions would help them live a little more happily in the time they had left.

As her parents, Len & Babs Curtis, made it their love of labour fulfilling their only daughter’s fairytale dream as a lasting tribute to her courage (if truth be known, theirs) Len recalls "I was ready to jump off the pier." My family, our businesses, it all suffered. It’s a wonder we didn’t go under.  Instead, we set about making the dream of our late daughter a reality.

Keys were handed over on our 35th Wedding Anniversary, and Donna’s Birthday.  A once derelict hotel, has now been converted to a haven for any child to be over-whelmed by. Themed rooms for absolute escapism, Winnie the Pooh’s Den, Cartoon World, Teddy Bears World, and Seasiders Dream. A must see to believe Circus Room: complete with a steam train encircling the ceiling, a wonderful Disney room.

Local sponsorship allows the whole family to visit all major attractions, free of charge.

A light sensory room and sensory gardens are shadowed by possibly the most poignant room a pretty wooden chapel-like quiet room. This is "where children can be laid to rest, or parents can go to scream".

Our honest opinion born by our experiences.

Donna’s Dream House is full of light, laughter, fun and most importantly life.  Donna’s Dream House is about "living not dying".

A heartbreaking fact out of over 500 families who have visited us nearly 400 children have sadly passed away.

Our Donna knew the greatest task set us would help us come to terms with her death, by helping others in a similar situation.

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Noujoum joins ICCCPO

Noujoum is a non-profit association based in Casablanca and Marrakech, Morocco, which is dedicated to helping sick children and their families.

We are very proud of being a new member of ICCCPO and becoming part of this major and extraordinary solidarity network.

Our daily commitment is to ease the management of childhood cancer by covering medical costs and providing psychological help. We are deeply convinced that sharing our respective experiences will help us achieve better results and bring more support to children and their families.

Catherine Sebti, Association Noujoum

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News from Nepal

Cancer Society Nepal (CSN) is very proud to be a member of ICCCPO. As a voluntary charitable organisation, established to create awareness of cancer in Nepal, CSN is still in its early stages. So, like a growing child, it needs love, affection, guidance, suggestions and feedback from all of you.

Amongst other activities, we are focusing our programme on childhood cancer, as today's children are tomorrow's world.  Cancer is a global issue, and it touches us all directly or indirectly. Let’s share our ideas and experiences.

What CSN has been doing

Two months ago, Cancer Society Nepal visited the Nepal government hospital for childhood cancer, taking medicine and fruits.  The children were very happy to see us, and their parents talked frankly and shared their feelings with us.

On 15 November 2008 we conducted a 3-hour childhood cancer awareness programme in a poor village area in Kathmandu. Everyone worked voluntarily, including doctors, nurses, and social workers. 75 children and their parents registered for the programme.

We are also planning to manage an accommodation hospital for childhood cancer patients and their parents.

Shambhu Prasad Kadariya, Executive Director, Cancer Society Nepal

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India celebrates National Cancer Rose Day

National Cancer Rose Day was originally conceived by Cancer Patients Aid Association [CPAA] as a day dedicated to making cancer patients smile. It has been celebrated on 22 September for the last 14 years in major cities in India. The whole city takes time out to visit cancer patients in different treatment centers, taking gifts, toys, roses and personal messages telling them that they care.

5,000 cancer patients are greeted in 33 different treatment centers in Mumbai, including hospitals, hospices, lodges, radiation centres and sanatoriums. All these centers are decorated with floral arrangements in the early hours, and this beautiful sight greets cancer patients when they wake up. Entertainment programmes for patients are arranged throughout the day, including appropriate film shows, orchestras, parties for young cancer patients, and hymns for the terminally ill.

Celebrities visit wards, giving immense happiness to patients who later tell us that this was the best day of their lives.

Doctors report that they have never seen patients so cheerful during their treatment.  Smiles light up their eyes and our hearts. There is no sight more satisfying for us at CPAA than the smile of a young cancer patient. Rose Day manages to make the patients and their relatives forget their agonies and battle with cancer. As part of this year’s Rose Day celebrations, Anita Peter of CPAA organised a Rose Day Fair for more than 500 cancer patients and their relatives at our centre. The patients played games, got tattoos  and bangles, enjoyed snacks and goodies, and met some of their favourite celebrities.

Shubha Maudgal, Cancer Patients Aid Association

Anand Niketan, King George V Memorial Infirmary

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Peppers

Happiness lying behind mysteries …

mysteries lying behind happiness.

Darkness lying behind sunshine and sunshine lying behind darkness.

More the mysteries … the happiness is more.

More comes the darkness, more is the sunshine enclosed in it and more challenging the life becomes … more desirable to live.

But a ‘desire’, doesn’t it sound materialistic?

The lines above, don’t they sound a bit materialistic?

Materialistic? … then what’s real my friend???

These subliming walls and those high, melting waterfalls?

The fragrance in the air and laws through Newton’s flare?

Beauty in those wet, light grey eyes and the tick-ticking glare …

Moments, hours, days and light years,

Sword-like cries and momentous cheers …

All so puzzled up, messed up, coiled with uncertainties of time,

With muddy sun-glasses of ambitions a deep dive into the hollow brine.

So confused I am, who am I and what for I am?

But where to look for the answers?

Answers!, so unpredictable.

Queries, questions, goals and desires, all so irresistible.

But who cares for the answers, and the questions that gave them birth.

Unknown challenges of life and the life afar, a deep sigh … all lost into the last mirth.

But again who cares for the last and the endless ends.

So challenging, enjoyable is every moment, life’s criss-crossed lanes, its florid tiles with unknown bends.

Yeah! This is the pepper of my meal.

Amazing becomes every next step, every new leap with this ageless zeal.

Shobhit Kaushal — Mumbai, India

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Interactive CDs for young people with cancer

The Degge Group Ltd of Arlington, Virginia, has developed two award-winning educational interactive CD-ROMs with funding from the National Cancer Institute at NIH. The first one, Kidz with Leukemia: A Space Adventure (2000), is for 4-11 year olds with leukaemia (no reading required for the youngest age group), and the second, Conquering Cancer Network: Empowering Teens with Tools, Info, and Inspiring Stories (aka CCN) (2006), is for adolescents with solid tumors.

These CD-ROMs are designed to help the child and their family. The child with cancer learns that s/he is not alone in the fight against cancer by ‘watching’ other children like themselves talk about their experiences with cancer, e.g., hair loss. The whole family is helped to understand the illness.

Healthcare providers are introduced, coping suggestions are offered, side effects and medications are explained, ‘videos’ of tests using live patients show what children with cancer have to go through and why they are necessary. All this information helps the patient lead a better quality of life, encourages compliance with the treatment, and thus increases patients’ chances to get better.

The evaluation of the CD-ROMs showed that children with cancer who used our CD-ROMs rather than standard printed material were significantly more likely to feel in control of their health from pre- to post-intervention measurement. Evaluation of the Kidz with Leukemia CD-ROM showed that children who used it were more satisfied than those with a leukaemia book, with the most positive response reported among 4-6 year-olds.

Children used the leukaemia book less often and for shorter periods than those using the CD-ROM.

Voiceovers, music, videos, games, and animations make these CD-ROMs a very interactive medium for learning. The both include a list of resources for the patient and his/her family. The leukaemia CD-ROM contains a drug database, while CCN has drug fact sheets on various chemotherapy drugs. CCN also has a section on ‘Late Effects’, which helps the adolescent and the family understand the potential problems s/he could face as a result of cancer treatment, and ways in which s/he can try to avoid some of them or deal with them.

Healthcare providers also like using these CD-ROMs as teaching tools for both patients and their residents / fellows in Haematology-Oncology training. Many would like to give these CDs free of cost to their cancer patients, so they can learn about their illness and treatment at their own pace, in the privacy of their own homes.

Both these multimedia CD-ROMs have been very well-received. So far, Degge has sold 843 copies in 16 countries and distributed more than 470 copies worldwide. However, although we receive frequent enquiries about the CD-ROMs, many people hesitate to buy them because of the cost.

Degge’s goal has always been to get sponsorship, so that every child and adolescent with cancer can get a copy of these educational products, regardless of cost. We want to distribute these CDs directly to children and adolescents who need them, or via not-for-profit childhood cancer organizations, cancer camps, and children’s cancer clinics. Each CD costs $29.95 for families with cancer, or $39.95 for others. On the occasion of its 20th anniversary, Degge is offering an extra 20% discount on these CDs throughout 2008.

You can find out more about the CD-ROMs at www.kidzwithleukemia.com and www.conqueringcancer.net.

For questions or offers of sponsorship, please call (703) 276-0067 ext 107 or send an e-mail to info@kidzwithleukemia.com or help@conqueringcancer.net.

Sharmila Kamani, The Degge Group Ltd, Arlington, VA

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Scholarships for cancer survivors in Alberta, Canada

Twenty-six cancer survivors received a surprise when KCCFA announced the first recipients of the KCCFA Derek Wandzura Memorial Scholarship. They discovered that everyone who applied had been granted a $1,000 scholarship for studies this fall.

Initially just a handful of young people were to be chosen this year because the fund only had $5,000 to award. But a $21,000 donation from Brahma Compression Ltd. brought the amount to $26,000, allowing all applicants to walk away with a scholarship.

"The calibre of the applicants was so high and their stories so inspiring that we decided to stretch the rules - and the fund - in honour of the inaugural year," said Brahma president Don Schafer, who chairs the scholarship committee.

The Kids Cancer Care Foundation of Alberta established the award last winter in honour of Derek Wandzura, the late son of Christine Wandzura, founder and CEO of KCCFA. Derek passed away from brain cancer at age nine: "I wasn’t able to see Derek reach the age of these kids here today," said Christine at the awards ceremony, "And I won’t be able to see him become a police officer like he wanted but I can see these kids reach their dreams — and that inspires me."

The scholarship is designed to help financially strapped families and level the playing field for young people suffering from the late effects of cancer and its treatments.

These may include blindness, deafness, unsteady gait, loss of limbs, small stature, learning difficulties, heart impairments, depression and a host of life-threatening diseases. Young people undergoing cancer treatment also miss more school than their  peers and may fall behind academically.

The $100,000 endowed fund is managed by The Calgary Foundation and its annual disbursement is $5,000, which is 5% of the total fund. KCCFA hopes to increase that amount in coming years, so the fund remains open to donations.

"We hope to grow the fund substantially next year, so we can give healthy sums to more young people," said Don Shafer. 

To donate to the KCCFA Derek Wandzura Memorial Scholarship fund, visit www.kidscancercare.ab.ca.

Gail Corbett, Manager of Communications, Kids Cancer Care Foundation of Alberta

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Care to Wear® web shop

Opened online November 19th 2008.

Care to Wear® headwear is made for children who suffer from hair loss due to chemotherapy or alopecia. We only use 100% natural fabrics. The construction of Care to Wear® caps and bandanas is specially made:

This means that:

• The scalp can breathe

• Care to Wear® caps and bandanas always stay in place

• It covers the back of the head entirely and hides the hair loss

• It gives protection against the harmful rays of the sun

Although special, Care to Wear® headwear resembles “normal” headwear in its design. Children do not want to stand out because they are different! So on the outside Care to Wear® looks like something their friends would wear, too.

We are opening our web shop, by request of parents. We are taking a step towards making it much easier for the children and their parents to buy Care to Wear®.  www.caretowear.dk

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International Childhood Cancer Survivor Network (ICCSN)

Contact Report

I hope those of you who could make the conference in Berlin found the programme beneficial and were able to take back new information and ideas to organisations in your own countries. I would like to extend my thanks to Dorothee Schmid, Maren Bösel and Christine Randall, for all their help in organising the survivor programme this year, and especially to Alexandra Brownsdon for chairing the survivor programme in Berlin.

In 2009 the conference will be held in Sao Polo Brazil, and we would love to hear from you if you think you can help plan the survivor programme. The survivor programme each year is intended for childhood cancer survivors and siblings of survivors aged 18 years or over who currently play a roll in survivorship activities in their own country, or who would like to establish such activities. If you would like more information about the survivor programme, please email me.

We are currently looking to strengthen the survivor committee, and I would be delighted to hear from anyone who thinks they have some skills that could help us out. We are looking for anyone (not just survivors or their siblings) with skills that could help our efforts to support the establishment and further development of the International Childhood Cancer Survivor Network, as well as the network and development of survivor groups around the world.

If we get a good idea of what skills people have, we can use each individual’s skills to strengthen the committee and help us support survivor groups or those wishing to establish survivor groups.

If we don’t have contact with your survivor group, or you would like to start a survivor group, please contact me and we can share some information.

Prudence Walker-Cuttance

Chairperson, International Childhood Cancer Survivor Network

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Our Survivor Group in Mainz

One topic discussed at the survivor meetings in Oslo and Vancouver was “Building up a Survivor Group”. I was a member of the Survivor Group in Heidelberg (Germany) for quite some time, and after I had heard so much about assembling a Survivor Group, I thought it would be nice having one in Mainz (Germany), the town were I was treated.

So I talked to the social pedagogue (Mr. Leimig) from the Parents Organisation in Mainz. He also thought it was a good idea to have a Survivor Group in Mainz.

After we had sorted out the most important points, we held our first meeting in June 2006.

If everything goes well we meet once a month. We do lots of different things together, and there are always between five and fifteen teenagers at each meeting.  Our group is not just for cancer survivors, but also for siblings and bereaved siblings.

“Through the group you have the chance to meet friends (from the ward) outside the clinic, and stay in contact.” That’s what a girl from our group said and I think that’s the point.

Christine Randall

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Acute lymphoblastic leukaemia protocols in the Netherlands

These are links to helpful articles about the better outcome of paediatric protocols compared with adult protocols.

1) Leukaemia article: Significant difference in outcome for adolescents with acute lymphoblastic leukaemia treated on paediatric vs adult protocols in the Netherlands.  http://www.nature.com/leu/journal/v18/n12/full/2403538a.html

2) Paediatric Blood and Cancer:  http://www3.interscience.wiley.com/cgi-bin/jhome/106561790

3) British Journal of Haematology:  http://www3.interscience.wiley.com/cgi-bin/jhome/118517380

Dr Patty E M Brouwer ICCCPO Secretariat, The Netherlands

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Setting up the new European Paediatric Hodgkin Network

The EU-funded Paediatric Hodgkin Network starts work in September.

Because of the limited experience with Paediatric Hodgkin's lymphoma in local hospitals, experts from various EU countries decided to create a reference network to fight this rare childhood cancer. Now, young patients with Hodgkin's lymphoma are being treated according to a common protocol in 13 European countries. The primary objectives of this Deutsche Krebshilfe e.V. (German Cancer Aid)-funded EuroNet-PHLC1 study are high cure rates and significant reduction of late effects, with the least necessary treatment toxicity.

One of the main aims of the project is the creation of a reference board made up of interdisciplinary experts in the fields of oncology, radiology, nuclear medicine and radiotherapy. The attending oncologists submit patients' data, including all original imaging data, to the reference board based in Halle and Leipzig, Germany. The experts assess the tumour stage and treatment sponse of every patient, and send the results to the local oncologists, thus providing a second opinion on the treatment decision.

This time-critical process requires modern communication techniques, so we are setting up a European Image Data Network to connect treatment facilities in various European countries. Along with the technical improvements, the EU funding within the framework of the Public Health Programme will allow for a Europe-wide high-quality treatment of all affected young patients, independent of their social or geographical origin.

The project’s main partner is the University of Leipzig. Responsible for the project is Professor Dr Regine Kluge, Deputy Director of the Department of Nuclear Medicine, University Hospital, Leipzig.

Magdalena Kaminska, Project Co-ordinator, European Paediatric Hodgkin Network

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ICPCN launches a Charter of Rights

The International Children’s Palliative Care Network (ICPCN) has published a Charter of Rights for children with life-limiting or life threatening conditions, which they wish to see accepted and ratified by governments and health departments around the world.

According to the United Nations Convention on the rights of the child, every child and young person has a right the highest attainable standard of health, as well as the right to be protected against abuse, neglect and all forms of ill-treatment. Governments are required to do everything in their power to ensure that children enjoy full and holistic development.

In the spirit of the UN Convention, the ICPCN Charter sets out the international standard of support that is the right of all children living with life-limiting and life-threatening illnesses, and their families.

The Charter calls for all such children to receive appropriate palliative care — care whose main purpose is to relieve suffering, whether physical, spiritual or emotional, and to promote quality of life.

"A child who dies without receiving adequate pain control and symptom management has suffered abuse - and an untreated HIV positive child is suffering neglect," according to Joan Marston, chair of the ICPCN.

Palliative care encompasses the entire family. It should begin at the time of diagnosis and continue alongside any curative treatment aimed at the disease.

If curative treatment fails, palliative care should be continued until the child dies and then with the bereaved family for as long as they need.

The Charter calls for palliative care to be provided within the child’s home or a child-friendly environment. It should be offered by professionals and caregivers trained in palliative care specific to the needs of children.

"Our fervent wish is that this Charter will prove to be a useful instrument for all those who campaign for improved hospice and palliative care services for children around the world," states Marston.

The ICPCN Charter has been translated into 17 different African and European languages which can be downloaded from the website at www.icpcn.org.uk

What is the ICPCN?

The International Children’s Palliative Care Network (ICPCN) was formed in 2005 to achieve the best quality of life and care for children and young people with life-limiting illnesses, and their families and carers, through networking, advocacy, information sharing, education and research.

It is coordinated from within South Africa and chaired by Joan Marston, who works for the Hospice Palliative Care Association of South Africa as the Paediatric Palliative Care Manager. •

For more information about this article please contact:

Sue Boucher, International Information Officer for ICPCN

Tel: +27 (0)31 765 7295.    Cell: +27 (0) 828974420.    Email: sue@icpcn.co.za

Joan Marston, ICPCN Chair

Tel: +27 (0)822 964 367.    Email: joan@hpca.co.za

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Introducing the new SIOP Europe website

We are really glad to inform you that we have now launched the new SIOP Europe (SIOPE) website and it is ready to receive visitors at: www.siope.eu

After several months of careful construction, essential input and guidance from experts within our SIOPE network, the website has been especially structured to provide easy access to a wide range of news, information and services.

Key features on the SIOPE website include:

Public domain

General information on the SIOPE office and its activities

The latest news on paediatric oncology, training courses and job opportunities in research groups / institutions

Useful links to childhood-cancer related public institutions, research consortia and NGOs.

Subscribers only

Access to the latest SIOPE internal news, such as meeting minutes from different working groups

Contact details of professionals engaged in the field of paediatric oncology and clinical trials across Europe

Summaries reporting on current trials throughout Europe

The latest information on SIOPE’s advocacy at the European level.

Initially, the SIOPE website will publish most of its information within the Public Domain. After a trial period of a few months, certain sections will then become password protected and will only be accessible for subscribers, who will be issued with personal login/password details.

Please note that we have extensively modified the previous contents, and the information on the site has now been improved, updated and better structured Please take a tour of our new SIOPE website, particularly the ‘Parents and Patients’ section. If you have any questions or comments please contact the SIOPE office at: jocelyne.wang@ecco-org.eu.

We look forward to receiving your feedback, ideas and comments.

We are also delighted to inform you that the SIOPE September 08 Newsletter is now available on the SIOPE website. 

Kathy Pritchard-Jones, SIOPE President

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Guidelines for the pharmaceutical development of medicines for paediatric use

The European Medicines Agency (EMEA) has published a concept paper on the ‘Development of guidelines on the pharmaceutical development of medicines for paediatric use’ (EMEA/138931/2008).

The document is available here:

http://www.emea.europa.eu/pdfs/human/qwp/13893108en.pdf

http://www.emea.europa.eu/pdfs/human/biosimilar/17073408en.pdf

http://www.emea.europa.eu/pdfs/human/ewp/111998enrev1.pdf

http://www.emea.europa.eu/pdfs/human/ewp/914708en.pdf

http://www.emea.europa.eu/pdfs/human/vwp/471703en.pdf

http://www.emea.europa.eu/pdfs/human/ewp/1437708en.pdf

http://www.emea.europa.eu/pdfs/human/biosimilar/11826407en.pdf

This concept paper is the first step towards developing scientific and harmonised guidelines for responsibly developing a medicinal product for use in different subsets of the paediatric population.

Anders Blædel Lassen.  European Medicines Agency (EMEA).  Medical Information Sector

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