While the world seems to be collectively losing its mind over Black Friday sales and savings this week, another far more neurologically-significant event appears to be flying under the radar: World Movement Disorders Day.
The event, happening on Wednesday November 29th, is aimed at boosting awareness of movement disorders – a group of neurologic conditions that can be especially difficulty to diagnose and treat - and which are becoming increasingly prevalent in the global population.
It’s a terrific initiative by the International Parkinson and Movement Disorder Society (MDS), and they have assembled a terrific toolkit of images and animated gifs for professionals in the pharmaceutical and biomedical industries to share though our social channels. (Please join us by sharing your support using #MoveDisorder.)
Raising awareness encourages the broader community to seek essential specialised care earlier, and just as importantly, may inspire the smartest minds within our community to address and investigate the challenges within the neurological disorder space with a renewed vigour.
But isn’t awareness of neurological disorders at an all-time high? you may well ask.
Here in Australia, the dedicated and passionate FightMND team have raised the bar when it comes to cause-related marketing, and last year inspired an entire a nation to dig deep and donate over $19.8 million to fund the search for effective treatments and a cure to motor neurone disease.
But the reality is that for all the work done by organisations like FightMND (for MND) and MDS (for Parkinson's disease and related neurodegenerative and neurodevelopmental disorders), a multitude of other rare, under-researched neurological disorders still exist.
Of the rare diseases affecting more than 300 million people worldwide, almost half of these diseases are neurological, and 90% of rare childhood disorders have major neurological effects.[1]
With the recent advances in molecular genetics there is an increasing number of these rare diseases being identified, many of them involving movement disorders, too.
You could mount the argument that the need to generate awareness for these rarer movement disorders is actually greater than the need to raise awareness for the more well-known movement disorders like Parkinson's.
Up to a staggering 95% of rare diseases (like rare movement disorders) lack an approved treatment, and the journey from bench to bedside remains longer and more challenging for rare disease treatments than mass-market drugs.
Issues regarding patient identification, diagnosis, standard of care are naturally problems in this space, too.
As we have written before, a stronger PBS is vital if we are to help the current generation of Australian patients with rare movement disorders.
We also need to reframe and promote the value of investing in rare disease drug development.
The Rare Disease Company Coalition estimates that the private sector makes up nearly 98% of total R&D funding for rare diseases and any decrease in private investment poses a serious threat to progress in in the space.
Especially since venture capital investments in rare disease were down over 41% in 2022, and rare disease IPOs were down 81%.[2]
The good news is that a recent IQVIA reports that there has been an upturn in the number of orphan drug (pharmaceutical agent developed to treat a rare medical condition) approvals by the FDA in recent years, while one of the therapy areas seeing the most orphan drug reimbursements through the PBS here in Australia is neurology.
This growing confidence in the people developing drugs for rare diseases (like rare movement disorders) is important news for patients and potential investors alike.
This Movement Disorders Day we encourage you to not only raise awareness of the need to better understand the neurological conditions that disrupt so many peoples' lives; but to join us in supporting the new and emerging treatments for its rarest forms.
References 1. rarecoalition.com/2023/10/25/risksofrare/
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