What are working groups?
Having a rare disease can be isolating and frustrating. You may feel like no one understands what you are going through. You may also need help to get a diagnosis and find the proper treatment for your condition.
That's why joining a working group for MPN can make a difference. An active group for MPN is a team of experts who have extensive knowledge and experience in MPN. They work together to raise awareness of rare diseases among the public and health professionals.
They also help people with rare diseases get referred to specialists who can diagnose and treat them.
How can Global MPN SF help you?
Global MPNSF is an organization that supports people with rare disorders, especially those with myeloproliferative neoplasms (MPN). MPN are a group of blood cancers that affect the production of blood cells in the bone marrow. One of the ways we support people with MPN is by organizing scientific groups or conferences where they can meet other people with the same or similar conditions and learn from experts in the field. These events also allow you to share your experiences and challenges with others who understand.
We have three working groups, each focusing on the specific needs of MPN patients at different stages of life.
Our groups are:
Children and Teens
Who face unique issues such as coping with school, social life, and future plans.
Pregnancy and Women Health
Who need special care and guidance during pregnancy, adult life and menopause.
needs from 60
Who may have other health problems or need assistance with daily activities.
These working groups aim to provide information, support families, and influence the services these patients need.
They also advocate for more research and funding for rare diseases.
Challenges faced by
those living with MPNs
MPNs affects a small percentage of the population. Most of MPN patients struggle to get a proper diagnosis, treatment, and support.
Some of the challenges are:
Lack of awareness among health professionals.
MPNs are complex and require specialized care. However, finding a doctor who knows about MPN conditions and how to treat them can be challenging. Sometimes patients must travel long distances or wait long to see a specialist.
Delayed or failed diagnosis.
Because MPNs are uncommon, they may not be recognized or suspected by healthcare professionals. This can lead to misdiagnosis, unnecessary tests or inappropriate treatment. Patients may also experience symptoms that are non-specific to their illness, making it difficult to pinpoint the underlying cause.
High cost and limited availability of treatments.
MPNs have no cure and costly treatments. Patients may also need help accessing medications only available in certain countries or regions.
Lack of specialists, research, and innovation.
More incentives and funding must be needed to research rare diseases than more common ones. As a result, there needs to be more knowledge and evidence about the causes, mechanisms, and outcomes of MPNs. There needs to be more development of new drugs and therapies for MPNs.
Social and emotional impact
Living with MPNs can be isolating and stressful. Patients may feel alone, misunderstood, or stigmatized by their condition. They may also face discrimination or barriers in education, employment, or social services. They may have difficulties dealing with their illness's uncertainty, complexity, and severity. They may also need emotional and practical support from their family, friends, and caregivers.
That's why we've organized the Global MPNSF Working Groups, a group of scientific experts who come together to discuss and develop strategies, sharing their knowledge and experiences to improve NPM treatment outcomes and refer people with MPN to cutting-edge specialists and treatments.
How can I join a working group?
If you wish to contact the working groups, you can do so by clicking on the link below. You'll find all the details on submitting your questions or concerns, who will handle your case, and what data is essential to help you. These working groups are very welcoming and friendly and will do their best to help you in any way they can. We have many patients who have benefited from their support, and we highly recommend them to anyone who has MPNS or knows someone who does.
Remember that you are not alone.
We are stronger together!
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