ITP

Understanding and recognizing the real-life impact of little understood conditions: We highlight Global ITP Awareness Week

eCMSadmin — Tue, 21 Sep 2021 16:00:00 +0000

Understanding and recognizing the real-life impact of little understood conditions: We highlight Global ITP Awareness Week

Danielle Hartigh, Rare Disease Patient Engagement

eCMSadmin Tue 21/09/2021 - 18:00

I was recently speaking with a patient who, for almost 30 years, has lived with immune thrombocytopenia (ITP) a life-changing rare blood disorder that causes painful bruises and uncontrolled bleeding. Before her diagnosis she considered herself a healthy young woman with a career in the armed forces. Since then, she has re-organized her life to adapt to her condition, which she describes as debilitating, challenging and often a rollercoaster of emotions.

With ITP, a malfunction in the body’s own immune system causes it to attack and destroy certain blood cells known as platelets. Platelets are crucial to the blood clotting function which prevents bleeding when you cut or bruise yourself. This means people living with ITP typically experience numerous blueish black marks on their bodies where small knocks have caused extensive bleeding. They may also suffer debilitating fatigue, as well as psychological symptoms such as depression and anxiety. As became clear from my conversation, the physical and emotional impact of living with ITP and the isolation which can accompany it can take its toll.

Despite there being over 200,000 people living with ITP worldwide, very few people know about the condition. This week, together with the Platelet Disorder Support Association (PDSA), the International ITP Alliance, ITP Support UK, and many other patient organizations around the world, ��ֳ� is recognizing Global ITP Awareness Week (September 20-24, 2021, with the full month of September being recognized in the United States). This awareness milestone helps amplify the voices in the community, so that people living with ITP can feel seen, heard and supported. To take part, people can participate in planned activities, including the Sport Purple for Platelets Day on September 24th, where supporters are encouraged to dress in purple to highlight the purpura in the disease name, as well as ongoing research into the tools and education needed to further research participation.

While every condition and every patient is unique, the rare disease community is united by shared challenges: a lack of awareness; diagnosis difficulties; and potentially life-threatening obstacles to care. At ��ֳ�, we are more determined than ever to invest in research and partner with the community to spread the word about patient participation in clinical trials – with greater public awareness, more patients living with rare diseases can be involved, meaning better understanding and, in the future, potential improved treatments to improve lives.

Although living with ITP has meant an abrupt change in her lifestyle, during our discussion, she shared her hope for the future. She now works as a volunteer for PDSA and, rather than allowing the condition to define her, has been able to access the information needed to contribute to clinical discussions with informed knowledge and transparent information regarding research.

“For me it has always been important to control the ITP rather than let it control me,” she says. “I take a holistic approach to my health and have tried all sorts of disease management techniques and treatments. There are major ups and downs for anyone with this condition.”

Volunteering to participate in a clinical trial means individual care and attention is offered to the health needs of all the people involved. Clinical trials can help the community learn more about the condition and improve the chances of access to better treatment for everyone.

This week, join us in recognizing this important global awareness milestone in ITP by liking our social media posts, encouraging those living with rare diseases to share their story, and contributing to the advocacy-led conversation. You can also find more resources and ideas about how to support the global ITP community through the International ITP Alliance, PDSA and the ITP Support Associate (UK).

Thank you for your help in honoring the network of patients, caregivers, physicians, and industry partners working together to improve outcomes for those living with ITP and other rare diseases.

solutions

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Scientific Collaboration and Innovation in Hematology

eCMSadmin — Fri, 04 Dec 2020 00:00:00 +0000

Scientific Collaboration and Innovation in Hematology

Maya Isaila, PV Neurology & Europe/International Solutions

eCMSadmin Fri 04/12/2020 - 01:00

Medical meetings provide an array of opportunities including relationship building and collaborations with healthcare and research experts. It is essential to work together to share ideas and exchange knowledge to promote healthy living and positive health outcomes for both preventative and curative care. Over the next few days, ��ֳ� will be virtually participating in the 62nd American Society of Hematology (ASH) Annual Meeting and Exposition.

We will be sharing best practices, discussing scientific collaborations, attending informative sessions and networking with experts to further inform our research and development efforts. ��ֳ� brings a deep heritage in epilepsy, Parkinson’s disease and immunology and our approach to expanding into hematology builds on these foundations. A crucial part of the healthcare journey is establishing relationships and as a physician, I am committed to helping build and foster these connections at meetings like ASH.

At the intersection of hematology and rare disease, ��ֳ� is focused on patients living with immune thrombocytopenia (ITP), a rare and chronic bleeding disorder in which the immune system destroys platelets. ITP can cause an array of physical symptoms from bruising to gum, nose bleeds and more severely to intracranial bleeds. Beyond physical symptoms, living with ITP can take a significant toll on a person’s life affecting their emotional and social interactions and cause additional stress and setbacks to their career development due to managing the disease and the uncontrollable symptoms.

The well-being of every single patient is important and it’s hard to see treatments failing. Though the path to innovative treatment options can present challenges, ��ֳ� is dedicated to addressing people’s quality of life, and their symptoms. Our rare disease experts continue to work towards a potential solution for adults living with ITP. We recently announced positive final results from the Phase 2 trial of our investigational treatment for ITP, and we are now in Phase 3 testing.

With the COVID-19 pandemic forcing healthcare practices and clinicians to re-evaluate their standard practices and procedures, the role and unique benefit of virtual meetings brings an opportunity to include more novel, cross-disciplinary projects. At ��ֳ� we remain steadfast in our commitment to rare disease patients and are looking forward to engaging in clinical dialogue with experts across the industry and around the world as we continue to drive solutions for patients living with ITP.

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ASH Rare Diseases ITP Hematology

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Driven by Patient Value, Not Numbers

eCMSadmin — Tue, 25 Feb 2020 00:00:00 +0000

Driven by Patient Value, Not Numbers

Chris Clark, Patient Value Neurology & Europe/International Solutions

eCMSadmin Tue 25/02/2020 - 01:00

At ��ֳ�, we believe the greatest needs can’t always be measured in numbers. We don’t see patient population sizes, we see people in need. Whether a severe disease impacts many people or a few, our goal is to help provide what patients value so they can achieve their best, whatever that means for them. This ethos is ever present around Rare Disease Day – this year on the rarest day, Leap Day 2020 – as we join the rare disease community to raise awareness and support for people living with rare diseases.

Through decades of serving the neurology and immunology communities, ��ֳ� has improved lives with the development of targeted medicines that make an impact and support programs for the communities we serve. As a continuation of this heritage, we are looking to support underserved patient populations living with rare neurological and immunological diseases where current treatment options offer little hope. This includes patients with rare immunoglobulin G (IgG) autoantibody-mediated autoimmune diseases – such as myasthenia gravis (MG), immune thrombocytopenia (ITP) and chronic inflammatory demyelinating polyneuropathy (CIDP) – who may experience symptoms that can be unpredictable, life-limiting and even life-threatening.

MG, for example, is a chronic neuromuscular condition where the body’s immune system mistakenly targets the connection between the nerves and the muscles, leading to muscle weakness and fatigue. We’ve been particularly motivated by the MG community and have learned about the extent to which MG symptoms can affect patients physically, socially and emotionally. One MG patient described her experience as lonely and isolating – not being able to breathe or speak well enough to talk to a loved one on the phone, or see well enough to read.

��ֳ� is focused on finding ways to improve the experience and quality of life for people suffering from these IgG-mediated diseases. We are continuing to use patient insights to inform our scientific advances and to build solutions that will deliver value so people living with these debilitating diseases can live their fullest lives.

This Rare Disease Day, ��ֳ� employees around the world are rallying together to participate in global and regional advocacy and policy events. We’re taking the time to listen and learn from patients, advocacy groups and the community – an area we’re committed to not just on this awareness day, but all year long. When we take time to truly listen, understand and partner with people living with rare diseases, we can help provide value that makes lives better beyond just treatment.

solutions

Rare Disease Day 2020 MG ITP CIDP

Comment:

Posted by Ulrika, 29 February 2020

Thank you! Amazing company! You already have my email address. Thank you Wim!

Comment:

Posted by Charles E. Kimple, 2 March 2020

Thank you for your advocacy and information. I have had CIDP for the past 7 years and have received IVIG every 6 weeks. I have a concern that
the disease is progressing into something different. I will be going. To Cleveland Clinic tomorrow for second opinion with a Neuromuscular
Neurologist.

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ITP

Understanding and recognizing the real-life impact of little understood conditions: We highlight Global ITP Awareness Week

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Scientific Collaboration and Innovation in Hematology

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Driven by Patient Value, Not Numbers

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