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CCI (formerly ICCCPO) works to build a world-wide community of childhood cancer organizations representing families of children with cancer and childhood cancer survivor groups. We share information and experience in order to improve access to the best possible treatment and care for children with cancer everywhere in the world. Complete the form to learn more.

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ICCD 2015 (Update 3)

ICCD update letter from chair CCIICCD

Dear  Members, Colleagues and Friends,

We are pleased to announce five new members of our ICCD coalition: NCD Child, Max Foundation, ICPCN (International Childrens Pediatric Care Network), St. Baldricks Foundation and CLAN (Caring and Living Among Neighbours). We encourage you to visit their websites and see if they have members or partner networks in your countries/regions.

Invite and involve them in your ICCD events/initiatives. By joining forces, we are stronger and will create lasting changes for kids with cancer, the survivors and their families.   

We are happy to report that our Facebook page, International Childhood Cancer Day, has now reached 809 likes. We are moving closer to our minimum target of 2015.

Every day, starting today, we will be showcasing one or two countries, sharing the pictures of their past ICCD events.

We will also post key information, “nuggets of wisdom“, on why childhood cancer is important and why we should #actnow4kidswithcancer, promote and mobilize support for #betteracces2care.

 

INFORM – EXCITE – INVOLVE

We invite you to visit the site everyday and share the informational/nuggets of wisdom in your social media platforms. We also urge you to use this site to build the interest and deepen the understanding of volunteers, supporters, partners and other allies on the importance of ICCD.

actnow (3)

If you don’t have one already, we encourage you to set up twitter accounts. It takes less than 5 minutes. Here below are some example of tweets that you can send .

Use our hashtags whenever you sent tweets. If the hashtag gets to be used many times, we can create a trend and be in the top 20/30 tweets. Being in this list will bring media and stakeholder attention to childhood cancer and ICCD. This is a way of moving the few to reach the many. 

Tweeting is part of creating small ripples that can lead to increased dialogue  on childhood cancer and eventually, significant changes in how governments, international development institutions and civil society responds to the needs and concerns of children/adolescents with cancer, the survivors and their families..  SO, LETs TWEET . JOIN OUR VOICES . CONNECT our FORCES.

Here are some sample/suggested tweets.

Share it with your  member parents, survivors, friends, family, volunteers, colleagues and other stakeholders. You can even use it as SMS (social media message/text ) to influentials and decisions makers in your community/country.

  • All children with cancer, irrespective of where they live deserve the best treatment and care #actnow4kidswithcancer
  • Children with cancer everywhere deserve the chance to live #actnow4kidswithcancer
  • In countries where there has been a significant reduction of U5MR, cancer has become a significant threat to the lives of children #actnow4kidswithcancer
  • The burden of childhood cancer is immense #actnow4kidswithcancer
  • The child or adolescent with cancer faces the trauma of diagnosis and treatment, the long-term effects of cancer, including fertility problems, second malignancies, and posttraumatic stress disorders #actnow4kidswithcancer
  • Childhood  cancer imposes consequences on all family members and even on future generations #actnow4kidswithcancer
  • Childhood cancer  affects not only kids with cancer but the entire family. #actnow4kidswithcancer
  • Families must not walk the cancer journey alone #actnow4kidswithcancer
  • Support should be provided to establish new parent groups or help those already in existence. #actnow4kidswithcancer
  • Parent groups help families navigate the cancer journey #actnow4kidswithcancer.
  • Parent groups have crucial roles in advocacy and awareness campaigns #actnow4kidswithcancer.
  • Parent groups  help reduce treatment abandonment /refusal #actnow4kidswithcancer.
  • Despite essential cytotoxic and supportive drugs for childhood cancer  being on the WHO Essential Medicines List, a number of these are not consistently available and/or affordable #actnow4kidswithcancer
  • Even among signatory  countries to the WHO Essential Medicines List not all have available and affordable childhood cancer drugs#actnow4kidswithcancer
  • There is an urgent need to address globally the production distribution and safety of generic off patent drugs for worldwide usage #actnow4kidswithcancer
  • There is an urgent need to reduce the cost of off patent generic cytotoxic and supportive drugs#actnow4kidswithcancer
  • There is an urgent need to ensure consistent production and worldwide availability of essential childhood cancer medicines #actnow4kidswithcancer
  • There are critical gaps in the palliative care response for children with cancer #actnow4kidswithcancer
  • Palliative care including pain control is a critical gap  in meeting the needs of children with cancer#actnow4kidswithcancer
  • There is  lack of training in children’s palliative care among health professionals #actnow4kidswithcancer
  • There is  inadequate pain management for  kids with cancer#actnow4kidswithcancer
  • There is   lack of pain relief medications such as morphine and opioids in paediatric formulations #actnow4kidswithcancer
  • Stigma associated with prescribing dispensing and usage of opiates 4kidswithcancer are often based on false beliefs #actnow4kidswithcancer
  • A worldwide strategy and concerted effort is required to overcome stigma associated with opiates use in childrenwithcancer#actnow4kidswithcancer

actnow v2

 

For next week , we will be sending you tweets on #betteraccess2care, such as

  • Childhood cancer affects all aspects of family life #betteraccess2carekidswithcancer
  • Treatment that is family centered achieves the best possible outcomes4kidswithcancer #betteraccess2carekidswithcancer
  • Involving the family and treating them as partners  achieves the best possible outcomes#betteraccess2carekidswithcancer
  • Achieving the best outcomes for kids  with cancer depends on access to quality comprehensive and coordinated care throughout the cancer care

journey #betteracces2carekidswithcancer

  • Lives are saved side effects minimized quality of life enhanced when kids with cancer have access to QCC care#betteracces2carekidswithcancer
  • Treatment abandonment is a serious challenge in many settings #betteraccess2carekidswithcancer
  • In many LICs treatment discontinuance/abandonment is as high as 60% #betteraccess2carekidswithcancer
  • There are critical gaps in the palliative care response 4kidswithcancer #betteraccess2carekidswithcancer
  • Palliative care for kids  with cancer must be integrated into the public health system. Specific policies must be developed; adequate funds allocated; training on palliative care for children provided #betteracces2carekidswithcancer
  • Palliative care teams must be present in all  health systems levels #betteracces2carekidswithcancer
  • Palliative care drugs including opioids that are in paediatric formulations must be made available to kids with cancer. #betteracces2carekidswithcancer

 

Feel free to translate these tweets so your countries can relate to them more.

We  hope that this year, working closely together as  CCI  family and collaborating with other allies, we can REACH MORE and DO MORE for kids with cancer, survivors and their families.

All the best

Carmen Auste, Philipines

Chair of CCI

More information on International Childhood Cancer Day 2015

Childhood Cancer Institution | CCI Affiliates
Childhood Cancer International