15th anniversary of Rare Disease Day in Lithuania

15th anniversary of Rare Disease Day in Lithuania

28 February is Rare Disease Day; Sandra Ivanauskienė, founder and leader of Norameda’s Special Care Medicine Department, points out the importance. 

Rare diseases have only come to global attention in recent decades, even though they have been with humanity for as long as any other health condition.

 In Lithuania, Rare Diseases Day was first celebrated on 29 February 2008, a “rare day” that occurs only once every four years. So, with only the 15th Rare Disease Day, we can take pride in the fact that in a brief period, the development and progress in treating rare diseases have been incredible.

Some rare diseases can be successfully treated, but even if a cure has not yet been developed, early detection allows for timely measures to alleviate symptoms, prevent progression and prevent complications, thereby improving the quality of life of the patient and their family.

Only 5% of rare diseases have an approved treatment. In addition, only a tiny proportion of medicines for rare and very rare diseases and conditions are included in the list of reimbursable medicines. We are happy to be part of this process and are doing our utmost to ensure this number grows.

Today, virtual networks across European countries connect more than 900 of Europe’s most advanced reference centres in more than 300 hospitals. These networks treat more than 700,000 patients with rare and complex diseases yearly. Lithuania is a successful participant in the EU network of reference centres, and centres of excellence for rare diseases are being set up in our country’s university hospitals. 

One of the company’s goals is to involve our doctors as much as possible in the international community, where they can not only learn from each other’s experience but also, very often, share their own experience and thus contribute to the development and promotion of progress in the treatment of rare diseases. 

This allows us to feel our work’s significant meaning and mission.”

Post-pandemic year marked by fragile supply chains and shortages of some medicine

Post-pandemic year marked by fragile supply chains and shortages of some medicine

Looking back on 2022, Rasa Tarvydienė, the Head of Norameda’s OTC Division, notes that it has been an exceptional year for the European pharmaceutical market.

The biggest challenge was fragile supply chains and shortages of certain medicines due to a lack of production materials. And this has already become the hallmark of 2022.

“We never had a year like this before due to supply disruptions. Still, despite the unprecedented challenges, our division managed to come out with high sales results,” says R. Tarvydienė.

Based on the IQVIA report, the pandemic dominated much of the past three years. Accordingly, the pharmaceutical market faced logistical and medicine disruption in some therapy areas throughout the pandemic. It is estimated that global market growth will return to pre-pandemic projected growth rates only by 2024.

“Still, our long-standing medicines have shown nice growth last year. However, I am particularly excited about the new products introduced to the market, especially from Italian brand Aboca. We have received excellent feedback from both patients and doctors. So I think the Aboca sales and product basket will only grow,” says R. Tarvydienė.

According to the Head of Norameda’s OTC Division, offering people a good product that you know is the highest quality and helps people with various conditions is very satisfying. As of Aboca, all the products are 100% natural, some even gluten-free.

“We have Aboca products for cough and the digestive system, especially effective for dealing with reflux: both for adults and children,” says R. Tarvydienė.

Still, Aboca is only one of many. The basket of products includes brands by well-known manufacturers from all over Europe: DMG Italia, Soho Flordis UK, Verfora from Switzerland, and others.

It’s important to note, Norameda is the only representative of such brands as Perskindol®, Rinopanteina®, Equazen®, GASTROTUSS®, Emofix®, and many others in the Baltics.

“No doubt, 2023 comes with challenges. Just look at the inflation rates. Still, I’m optimistic. We have an expansive product basket, so we are looking forward to the coming year with confidence,” says R. Tarvydienė.

There is more than one reason for optimism: the launch of the updated Norameda online pharmacy and deals on new brands already on the way.

“This year, our primary focus lays on Ophthalmology. So stay tuned for exciting news,” ends the conversation the Head of Norameda’s OTC Division, Rasa Tarvydienė.

Head of the Norameda Special Care Medicine Department, “Fighting for life takes the longest”

Head of the Norameda Special Care Medicine Department, “Fighting for life takes the longest”

At the start of 2023, we take some time to review the past year and draw the line into the future. Sandra Ivanauskienė, founder and leader of the Norameda Special Care Medicine Department, took the time to share some insights.

“Special Care Medicine Department continues its cycle of successful years. 2022 was a good one, as we had the growth in sales, the addition of new people to the team, and, most of all, the latest treatment options the company could offer Lithuanian patients,” S. Ivanauskienė reflects on 2022 year.

New medicine for the rare disease patients

The leader of Norameda Special Care Medicine Department is mostly thrilled that due to her team’s efforts, patients with rare diseases received treatment, could adhere to their treatment regimen and recover or at least alleviate the symptoms caused by their condition as only 5% of rare diseases have treatment.

In 2022, the Special Care Medicine Department successfully entered the ophthalmology field by taking over the representation of a drug for treating hereditary Laber neuropathy.

“We have successfully entered this new field for the company, where we have built on our experience to become trusted partners and collaborators,” points out S. Ivanauskienė.

Furthermore, last year Norameda introduced a new medicine for Parkinson’s disease to the Lithuanian market. So far, the company is the only one offering this unique treatment opportunity in the Baltic States and neighbouring countries.

Although this new medicine for Parkinson’s is not reimbursable, at least patients can access it.

“We have done our best to spread the word: reached significant number of patients and have had excellent results: some of the patients are rising from the bed”, says S. Ivanauskienė.

War in Ukraine has affected every person

However, according to the leader of the Special Care Medicine Department, 2022 was even more challenging than the previous years, marked by the COVID-19 pandemic. The war in Ukraine has affected, albeit indirectly, every person and field of activity.

“We were no exception. Still, these heartbreaking events have made us realise that pharmaceutical activity is resilient and stable because the fight for life lasts the longest,” says S. Ivanauskienė.

According to the Norameda’s department leader, despite the challenges, they have remained as true as ever to the company’s values and purpose – to strike a balance between profit and serving people.

“We continue to rely on the principle of timely and correct communication – which allows us to clarify, uncover and then address all the problems and challenges to reduce the burden of the disease,” says S. Ivanauskienė.

New year – new opportunities

2023 is a year that presents itself with new opportunities and challenges. There is an ongoing plan to introduce a new treatment option for Fabry disease to the Lithuanian market. Another new medicine will be presented for the treatment of rare diseases.

“Furthermore, we are expanding our range in the field of neurology, and we are vital partners in neonatology. I strongly believe that with our experience, all the challenges will finally turn into new opportunities for our patients and the company”, finalises S. Ivanauskienė.