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Working with pharma workshop

Our third workshop of 2015 discussed how patient groups and pharma can work together on their common goal: getting treatments to patients.

Pharmaceutical interest in rare diseases is on the rise, so we organised a training workshop last Friday for patient groups and pharma alike to discuss how the two can collaborate and work together. 16 patient groups and 15 pharmaceutical companies were represented.

Virginia Acha - ABPI

The workshop began with a presentation from Virginia Acha from the ABPI, whose presentation set the theme of transparency for the day. She explained that to overcome misperceptions in the media around patient group independence, any patient group-pharma relationship need to set clear rules for engagement, have mechanisms in place to ensure transparency, and have ongoing dialogue to make sure both parties are on the same page. Virginia explored existing frameworks in place from EUPATI, EURORDIS, and EU that support the establishment of these partnerships, as well as sharing ongoing projects at the ABPI to provide guidelines on interaction.


Bruce Faulkner-Dunkley - SOBI

The second half of the workshop took on a new format compared to previous events, with four case study presentations exploring the experiences of pharma and patient groups in collaborating. Bruce Faulkner-Dunkley from SOBI presented first, sharing his experience developing a treatment for the ultra-rare disease, alkaptonuria. Bruce stressed that in the story of drug development, patients are the heroes and so need to be central to the process. Pharmaceutical companies should therefore take on the role of facilitator in enabling the hero in their journey.


Tanya Collin-Histed - Gauchers Association

Tanya Collin-Histed from Gauchers Association followed, who picked up on Virginia’s point of the importance of patient groups remaining independent in the relationship. Tanya stressed that patient groups depend on patients, clinicians, and scientists trusting in the organisation, and should ensure they are not influenced through a partnership with pharma.


Namrata Taak - GSK

Namrata Taak from GSK provided a second pharmaceutical perspective on working with patient groups. Namrata explored the important role patient groups play in providing companies with a better understanding of patient experience and patient needs. She shared three examples of GSK’s interaction with patient groups in running a feasibility study, developing a registry, and running a clinical trial.


Robert Meadowcroft - Muscular Dystrophy UK

The final case study was given by Robert Meadowcroft from Muscular Dystrophy UK, who explored the specific example of the drug Translarna. Robert explained how a relationship with pharma can be successful in developing a drug, but then run into trouble when seeking to ensure patient access to the drug.



The workshop closed with a panel discussion session, moderated by Findacure’s Chairman Nick Sireau. The delegates and speakers explored topics around independence versus impartiality, how patient group-pharma relationships can go wrong, and the limits to the relationship.

We would like to thank all the presenters for giving interesting and insightful talks, Zuhura for graphically recording the event, Barbara for her beautiful photography, White & Case for the wonderful venue and catering, and all of our attendees for joining us at the workshop!


Working with pharma

by Libbie Read time to read: 6 min