Rare Disease Archives - Magpie Concept - Medical Communications Agency

Rare disease & the dilemma of access in MENA

Market Access, Rare Disease / Magpie Concept

Rare diseases are a broad group of conditions that affect a small number of people. Most patients have no treatment or management options available for their condition. As awareness and understanding of rare diseases are often low, many patients struggle to find adequate information about their condition. They may feel isolated, overwhelmed, and unsupported. This limitation of treatment and support has a significant emotional, psychological and financial impact on patients. In the last two decades, concerted public policy efforts have led to a marked improvement in the understanding of many rare diseases and the availability of effective treatment options. However, rare diseases pose particular challenges for research and clinical development. Even if treatments exist, patients may wait several years for a correct diagnosis. Many patients are unable to receive them as often they are not reimbursed by their national health care system or are simply unavailable in their country. According to a survey conducted by the National Organization for Rare Disorders (NORD), 61% of patients had been denied or faced delays accessing treatments that required pre-approval from an insurance company, and 18% had been denied referral to a specialist.Patients with rare diseases should have the same right to treatment and care as patients with other common diseases. Therefore, national governments and healthcare systems across the globe should prioritize improving care for rare disease patients and optimize access to treatment and follow-up tests.

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‘My Name is’ a new campaign to raise awareness of rare diseases by Magpie Concept

Every year we celebrate the ‘Rare Disease International Day’ on the last day of February. More than 300 million people are suffering from different types of rare diseases. There are between 5000 and 8000 rare diseases, most of them with a genetic basis. Despite the huge efforts that are done every year to this day, we believe at Magpie Concept that it is not enough. Having said we are happy to launch our social Media Campaign “My Name is ….” to raise awareness of the different types of rare diseases. “My Name is” is a campaign that aims to visualize how the patient feels and suffers while talking about his/her disease. At the same time, it tries to personalize the disease itself. All this is happening in less than 90 seconds. The content will be available two times every month (the 14th and 28th of each month). Magpie Concept is planning to cover different rare diseases like Duane syndrome, acromegaly, sickle cell anemia, Sotos syndrome, and others. We believe that this campaign is only that start and the first brick on raising awareness on rare diseases. Finally, we are always happy and open to future ideas and collaborations that would make this idea glow and grow. Having said so, we decided to allocate a dedicated email for rare disease initiatives and quires. We welcome ideas and partnerships that would improve and raise the awareness level on rare diseases.email: rare.is.many@magpie-concept.com