People with rare blood disorder to be supported by a new website offering symptom recognition tools and resources to improve understanding of their condition

Results from a new study finds that people with paroxysmal nocturnal haemoglobinuria (PNH), a rare blood disorder, have significantly impaired quality of life and work productivity due to the condition’s symptoms^[i]. With these limitations exposed and to support improved awareness and diagnosis, Sobi® has today announced their launch of my-PNH.com, a new digital platform offering patients and their caregivers valuable information and tools to provide support in understanding PNH and its symptoms.ⁱ

The study, sponsored by Sobi, assessed the burden of illness in PNH patients in France, Germany and the United Kingdom. The patient-reported insights revealed that despite receiving treatment, many people with PNH still experienced physical, emotional and mental symptoms negatively impacting their day-to-day life.ⁱ  The new research showed 85% of PNH patients reported over 60 hours a week of impaired daily activity, and almost all patients in paid employment reported PNH-related work impairment.ⁱ

Paroxysmal nocturnal haemoglobinuria is a potentially life-threatening acquired bone marrow disease.^[ii] The most common symptom of PNH is fatigue, however, half of the study respondents reported suffering from cognitive problems, such as memory loss, confusion, brain fog and difficulty focusing on tasks.ⁱ  Patients reported that these symptoms have a considerable impact on their productivity, preventing them from working altogether in some cases.ⁱ

The mission of my-PNH.com is to increase awareness of PNH, improve diagnosis and empower more people with PNH  to feel less burdened by their illness. It provides a wide range of resources including:

• A downloadable symptom tracker to record and monitor PNH symptoms over time
• Communication strategies to help people openly discuss their condition with their healthcare provider, loved ones, colleagues or employer 
• A resource hub with access to downloadable infographics and videos to help understand the disease

“Information about PNH can be limited as the condition is so rare. The patient community has initiated various disease awareness initiatives and we are grateful to have partnered on multiple projects. With the my-PNH.com website we aim to support existing initiatives to further equip people with PNH and their caregivers with useful information and tips to help manage the disease and identify potential solutions, especially in places where there is not so much available yet,” said Christel Paganoni, Global Head of Community Engagement, Sobi. “We are excited to launch my-PNH.com”.

PNH can affect anyone regardless of their age, race or gender, and symptoms overlap with other illnesses. As a result, people with PNH can find it difficult to effectively communicate their symptoms and many face challenges with diagnosis, involving long periods of uncertainty and numerous referrals.^[iii]

Visit my-PNH.com to learn more.

Sobi®
Sobi is a specialised international biopharmaceutical company transforming the lives of people with rare diseases. Providing sustainable access to innovative medicines in the areas of haematology, immunology and specialty care, Sobi has approximately 1,600 employees across Europe, North America, the Middle East and Asia. In 2021, revenue amounted to SEK 15.5 billion. Sobi’s share (STO:SOBI) is listed on Nasdaq Stockholm. More about Sobi at sobi.com, LinkedIn and YouTube.

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ⁱ Panse J. et al., The burden of illness of patients with paroxysmal nocturnal haemoglobinuria receiving C5 inhibitors in France, Germany and the United Kingdom: Patient-reported insights on symptoms and quality of life. 2022. 11-3. Eur J Haematol. 2022. [Accessed September 2022].

ⁱⁱ Dacie JV., Proc R Soc Med. 1963;56(7):587–596. 2. PNH Support. What is PNH? 2018. Available at: https://pnhuk.org/what-is-pnh/. [Accessed September 2022].

ⁱⁱⁱ Open Access Government., A focus on rare disease: Paroxysmal nocturnal haemoglobinuria (PNH). 2022. Available at: https://www.openaccessgovernment.org/paroxysmal-nocturnal-haemoglobinuria/66937/#:~:text=Bone%20marrow%20transplants%20can%20cure%20PNH%20but%20are,affects%20rare%20diseases%20generally%2C%20equally%20applies%20to%20PNH. [Accessed September 2022].

[i] Panse J. et al., The burden of illness of patients with paroxysmal nocturnal haemoglobinuria receiving C5 inhibitors in France, Germany and the United Kingdom: Patient-reported insights on symptoms and quality of life. 2022. 11-3. Eur J Haematol. 2022. [Accessed September 2022].

[ii] Dacie JV., Proc R Soc Med. 1963;56(7):587–596. 2. PNH Support. What is PNH? 2018. Available at: https://pnhuk.org/what-is-pnh/. [Accessed September 2022].

[iii] Open Access Government., A focus on rare disease: Paroxysmal nocturnal haemoglobinuria (PNH). 2022. Available at: https://www.openaccessgovernment.org/paroxysmal-nocturnal-haemoglobinuria/66937/#:~:text=Bone%20marrow%20transplants%20can%20cure%20PNH%20but%20are,affects%20rare%20diseases%20generally%2C%20equally%20applies%20to%20PNH. [Accessed September 2022].