Focus on rare diseases and uncommon cancers

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Meet Corey

Corey is 36 years old. In 2014, he was diagnosed with Stage 4 non-small cell lung cancer ALK+ and given 6 months to live.

"Everyone was in shock", he explains. "I had never smoked, rarely drank, had a healthy diet and I am keen cyclist and swimmer. I thought I was in great health."

Corey’s condition is caused by a rare gene mutation that affects only 1–2% of people with his type of lung cancer. Luckily, recently developed targeted gene therapies are an option for Corey. They are not a cure, but can slow or stop cancer progression. "With two young kids and a beautiful wife, having a little bit more time means everything to me", he says.

To learn more about rare lung cancers, visit www.rarecancers.org.au

Focus on rare diseases and uncommon cancers

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Meet Josephine

Josephine was born with beta thalassemia major, a rare genetic condition that prevents her bone marrow from producing functioning red blood cells. As a result, Josephine must undergo blood transfusions every 3 weeks to survive.

“It was very difficult growing up”, Josephine says, “not only because I was living with this illness, but because people often judge those who are a little bit different. It’s easy to lose your sense of self”.

As an adult, Josephine has set about helping others living with rare blood disorders. She writes a blog, produces videos and has published a book.

She received her Masters Degree in Social Work, despite her doubters. “So many people told me I couldn’t do things, but just did them anyway. If you don’t see your illness as an obstacle and just live with it as part of yourself, you can overcome anything. You’re not different, you’re just as magnificent as everyone else.”

To learn more about thalassemia, visit www.thalassaemia.org.cy/

Focus on rare diseases and uncommon cancers

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Meet Angus

Angus (second right) was 10 years old when he was diagnosed with Hodgkin’s Lymphoma, a rare form of cancer that affects the lymph nodes. Until his diagnosis, Angus was a typical energetic boy; all blonde hair, tanned skin and a big smile.

After an initial successful course of chemotherapy and a period of remission, Angus’ condition relapsed.

As Angus’ mum explains, “2015 has been a tricky year. Some treatment options have been exhausted and some didn’t work well for Angus.” Thankfully, there are more treatment options to try, and Angus continues his fight with patience and dignity every day.

To learn more about Hodgkin’s Lymphoma, visit www.rarecancers.org.au

Focus on rare diseases and uncommon cancers

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Meet Nabila

“I have a clear vision – to find women who suffer from bleeding disorders and to help them deal with various aspects of their lives,” explains a resolute 30-year-old Nabila, who herself suffers from a rare blood clotting condition known as Factor V deficiency or parahaemophilia.

Nabila understands too well the daily challenges of living with a bleeding disorder, “When I was 4-and-a-half years old, I fell down from the stairs and suffered a brain bleed,” she recalls, “I was on a verge of death.” However, her condition has not stopped her from completing multiple degrees, working, travelling or volunteering.

As a woman with a bleeding disorder, Nabila faces unique problems. However, as treatment for Factor V deficiency is usually required for severe bleeds, she can live her life to the fullest and continues to raise awareness of haemophilia.

To learn more about Factor V deficiency (parahaemophilia), visit www.wfh.org

 

Focus on rare diseases and uncommon cancers

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Meet Luong

Luong is 8 years old. He was still a baby when he was diagnosed with severe form of haemophilia A, which is caused by low levels of clotting Factor VIII and results in frequent and often spontaneous bleeding into his knees or shoulders.

Despite his young age and many hospital visits, Luong faces his condition with strength and courage. As his mum recalls, “While his friends are afraid of injections, needles, blood tubing and going to the hospital, Luong is always calm, and even extends his arm to the doctor without fear of the injection or infusion.”

With the support and encouragement from his family and medical staff at the Haemophilia Centre at the National Institute of Haematology and Blood Transfusion in Hanoi, Vietnam, Luong will continue to receive necessary treatment to ensure his wellbeing.

To learn more about haemophilia A, visit www.wfh.org

Focus on rare diseases and uncommon cancers

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Meet Tracey

Tracey is 48 years old. After surviving breast cancer at age 40, she was recently diagnosed with non-small cell lung cancer called ROS 1+, which primarily affects non-smokers.

Tracey has three amazing children, and before her diagnosis enjoyed her dream job working with children at the local YMCA Crèche.

“I was heartbroken as I didn’t see this coming”, she explains. “I’m currently just over half way with my chemo and responding well.”

The next step is to go onto a trial drug. With the help of Rare Cancers Australia, Tracey is determined to be around to be a mother to her children and to grow old with her husband.

To learn more about rare lung cancers, visit www.rarecancers.org.au

Focus on rare diseases and uncommon cancers

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Meet Yu Fei

Yu Fei is 11 years old and lives in Singapore. As a baby, he was diagnosed with moderate haemophilia B. Because of a danger of internal bleeds that result from a shortage of clotting Factor IX, he has to be careful to avoid contact sports. However, like many boys of his age, Yu Fei loves playing catch and soccer with his friends.

Yu Fei’s condition can be alleviated by infusions of a clotting factor, which are co-funded with subsidies from the Haemophilia Society of Singapore. In addition, Yu Fei and his parents participate in seminars and activities organized by the Society, which also provides them with emotional support.

Yu Fei is hopeful about the future as he confesses, “I understand that haemophilia is a lifelong condition, but I look forward to the day when a cure can be found.”

To learn more about haemophilia B, visit www.wfh.org

is a specialist healthcare communications and commercialization consultancy
Our priority is to ensure that patients and families affected by rare diseases and uncommon cancers receive the best possible care and support
What's in a name

Focus

We work exclusively on rare diseases and uncommon cancers

Experience

Our consultants have been working in the field of rare diseases and uncommon cancers for more than 10 years across more than 25 therapy areas

Expertise

Our team includes healthcare communications specialists and consultants with experience in clinical development, marketing, regulatory affairs, forecasting, commercialization, value communications, medical affairs and patient advocacy

Insight

We're not satisfied to adhere to the status quo. We use our experience and expertise to continually look for new ways to promote improved patient care

Reach

Through our offices in Asia, the Middle East, Europe and North America, we can offer clients global reach combined with local expertise
We utilize three key service platforms to promote improvements in patient care
Communication

Providing clear and compelling information and clinical evidence to aid appropriate decision making

Commercialization

Supporting every stage of the development of new therapies for rare diseases. From opportunity assessment, clinical programme design and access strategies, through to global launch support

Communities

Facilitating collaboration between stakeholders to enhance understanding, promote access to effective treatments and improve patient outcomes

What we say

Establishing new models for communication strategies in rare diseases
Establishing new models for communication strategies in rare diseases
Portfolio planning, marketing and lifecycle management for rare disease medicines
Portfolio planning, marketing and lifecycle management for rare disease medicines
Challenges posed and opportunities presented by rare diseases in China
Challenges posed and opportunities presented by rare diseases in China
Comradis is proud to collaborate with the following organizations for the ultimate benefit of patients across the globe who are affected by rare disease and uncommon cancers
We believe that all patients deserve the best possible care
To learn more about how we can help you to develop and commercialize new treatments for rare diseases and uncommon cancers, please get in touch
Asia:
richard.allcorn@comradis.biz
Eumea:
jonathan.morton@comradis.biz
USA:
adam.handler@comradis.biz