Genzyme’s new rare disease advocacy website

In Uncategorized by Caroline HornbyLeave a Comment

genzyme's new rare disease advocacy group Siren Interactive kindly provided this guest blog post from their blog, SirenSong.

The rare disease patient advocacy team at Genzyme recently launched a rare disease advocacy website, Genzyme Rare Community, that includes a blog. I talked to two of the site creators (members of the advocacy team), Jamie Ring and Cara Hesse, about http://www.genzymerarecommunity.com. For transparency, Genzyme is a client of Siren Interactive; however, we did not work on this project.

What was the impetus for creating the site?
Jamie: Genzyme has been a leader in the rare disease space for more than 20 years. As our team has been engaging with patient leaders in an increasing number of countries, especially in developing nations, we heard about the need to understand more of what's happening globally. In particular, patient groups that are just starting out want to know what is working for others.

While there are many available resources, we are in a unique position because Genzyme works globally with rare disease groups across different disease states. We are also a strong proponent of advocacy within industry, which is a burgeoning field in itself. There is a lot of interest in this topic and we thought it would be great to share what advocacy is like at Genzyme: what we are doing and what's impacting the rare disease advocacy community. More importantly, we want to share best practices and promote the good work being done by patient group leaders. There are common themes that we hear from patient organizations, ranging from the challenge of a lack of resources to prioritization of key activities, so we wanted to highlight best practices across the patient advocacy space.

How will the internal processes related to the Genzyme Rare Community evolve?
Cara: This is the first website of its kind for Genzyme and we only recently launched, so the site will change over time. Currently, we're adding a new blog post about once a week and we hope to increase that up to twice a week. We also plan to eventually add the ability to comment on the blog posts. The language barrier is another challenge and we're hoping to make the site more accessible. Right now, all the content is approved internally by our medical, regulatory and legal team, who have been very supportive and quickly provide feedback.

Are you open to guest blog posts?
Jamie: Yes, for example, we currently have a guest post about the Fabry Family Weekend. For the site to succeed, it has to be in partnership with the community, so where we see best practices or something unique, we'll invite group leaders to submit a post. We're also open to topics and ideas suggested by community members. We plan to do an online survey later this year and I'm sure this feedback will help to inform future content.

We also want to create an understanding of what an advocacy professional within industry does and we're hoping to have interviews of industry folks done by patient advocates. This "behind-the-scenes" type of story can be very useful.

How are you promoting the Genzyme Rare Community?
Cara: In addition to a press release and internal communications, we're reaching out to all of our partners as well as larger umbrella groups to help raise awareness of the site. It's a continuous process that never really stops!

The Principles of Collaboration sets clear expectations. Is this something that has guided the team for a while?
Jamie: This is something we've very proud of as an advocacy team within Genzyme, that these values are always applied and have been for years. We want to make sure there is authenticity, benefit and respect in every collaboration we have with the community. This site is the embodiment of our approach to advocacy.

The pharmaceutical industry has had challenges with its reputation over the years. We think it's important to talk about the investment in advocacy teams as an example of how the industry is supporting consumers in innovative ways. We should promote the excellent work that companies are doing (not just Genzyme), particularly in the orphan drug space. I'm excited about the website and the opportunity it presents.

For more information on rare disease and government policy check out the World Orphan Drug Congress USA.

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