Rare Disease Day Interview: John Stamler, Ben’s Friends

In Advocacy, Clinical Development, Market Access, Orphan Drug Congress by Georgia

John Stamler, Partner at Ben’s Friend’s shares some of his thoughts on the sector, ahead of rare disease day.

What do you think will be the biggest hurdle to the development of treatments for rare diseases in the next year?
Collaboration, money and awareness are key for there to be development of treatments for rare diseases. Collaboration across all walks of the rare disease universe is very important. What I mean is doctors, hospitals, patients, caregivers, pharma, insurance companies, researchers and nurses need to be talking, sharing information and working together. Patients have to be included very early in the development process of treatments. Money is obviously an issue especially for pharma companies and ultimately making a return on their investment in particular treatments. Pharma’s costs will come down if they are able and willing to include patients early. As a result of all of the rare disease foundations, advocacy groups, charities and organizations, awareness for rare diseases has never been better and will continue to grow in the years to come.

What do you predict will be the biggest thing to shake up the sector this year?
Wearables are certainly in focus in 2015. Away from wearables, I am not aware of any big thing coming this year but it is clear that more and more pharma companies are entering the rare disease treatment space which gives us all hope for more and more treatments to be brought to the market.

How do you feel the relationship between industry/academics and patient advocacy groups will develop?
I have seen firsthand how the relationship is improving. All parties are willing to collaborate and industry is well aware of how well educated the patient is now as a result of the internet, support groups and their desire to understand their respective conditions. It will only get better with time and more and more folks out there raising awareness for their particular conditions.

What impact has the ALS Ice Bucket Challenge had on awareness of the rare disease sector and for your organisation directly?
I think the Ice Bucket Challenge was genius way to raise money and awareness for ALS. It is hard to quantify the impact the challenge had on our organization but it helped shine a bright spotlight on ALS and rare diseases in general.

The World Orphan Drug Congress will be taking place in Geneva on 12-13 November; we hope you will join us! Visit the website for more information