blog

Supporting rare disease research is a big part of our work here at BBK and rare disease recruitment is an expertise that our sponsors and CRO customers have come to expect from us.

While progress has been made to improve the lives of patients with rare disorders, there is much that still needs to be done to reach patients, further research, find new treatments and improve outcomes. Our most recent eBook, “Rare Disease Research. What’s Next?” is a collection of insights from a variety of rare disease stakeholders, including Roberta Carson, Founder and President of Zaggo, Inc. – a national nonprofit devoted to helping patients and families be more engaged members of their medical teams.

Topics: Patient Advocacy, Patient Engagement, Patient Experience

Late last month, BBK hosted the webinar Rare Disease 20/20: A Look at the Challenges and Opportunities in Rare Disease Clinical R&D giving our listeners the opportunity to gain insights from thought leaders in rare disease patient advocacy and orphan drug development.

Topics: Webinars, Patient Advocacy, Rare Disease

Partnering with advocacy groups is a vital component to any clinical trial outreach effort. The approach to working with advocacy groups has changed in recent years. It is not just about the one connection you may have with one organization. These days it’s about working with the condition community as a whole for one common goal. Advocacy groups often have direct connections to people affected by a condition and can be highly beneficial to enrollment throughout the patient recruitment process.

Topics: Patient Recruitment, Patient Advocacy

Today is Rare Disease Day. Launched by EURORDIS and its Council of National Alliances in 2008, this annual event has grown to include a record-breaking 84 countries from around the world that have come together to raise awareness among the general public and decision makers about rare disease and its impact on the lives of patients.

Topics: Patient Centricity, Patient Advocacy, Rare Disease

This week's blog comes from our friend Christel Aprigliano of thepefectd.com. Thank you for contributing!

Topics: Patient Centricity, Patient Advocacy

Today is World Cancer Day. Eighteen months ago, my dear friend Sarah Montgomery died of colon cancer and I posted the original “I Hate Cancer” blog. I still miss Sarah very much, but she was only one of many people I mentioned in that post. Since then, my friend died from her metastatic brain cancer, my aunt died from adenocarcinoma, and every one of my friends then in treatment for breast cancer has survived and is doing very well. One even gave birth to her third child.

Topics: Patient Centricity, Patient Advocacy

Topics: Patient Advocacy, Branding and Advertising, Conferences

Topics: Webinars, Patient Centricity, Patient Advocacy

Topics: Webinars, Patient Centricity, Patient Advocacy

Topics: Patient Advocacy, Social Media