Expert Insights

Expert Insights

#ShowYourStripes for Rare Disease Day 2021

#ShowYourStripes for Rare Disease Day 2021
18 February 2021

February 28 is Rare Disease Day, and with approximately 7,000 rare diseases in the world – many untreatable – it’s a call to action that few of us in clinical research and development can resist.

Join us this last week of February, as we #ShowOurStripes with the National Organization for Rare Disorders (NORD) to raise awareness for rare disease research.

The zebra and its unique black and white stripes have long been the official symbol of rare disease in the US and beyond. Just like humans and our fingerprints, no two zebras are alike. This year, we’ve asked our Synteract employees to share pictures of themselves, their loved ones, friends, family (even some pets!) in their unique stripes.

You’ll also find us participating in next week’s OCT West Coast, where Jess Conicelli, Executive Director, Strategic Development, Rare, Orphan, & Pediatric Diseases, will present a session on operationalizing patient recruitment and retention in rare disease trials, including:

  • Choosing vendors based on population, indication, and country/site mix
  • Establishing and nurturing relationships with patient advocacy groups, key opinion leaders, and registries
  • Harnessing the power of social media and the rare disease space
  • Assessing the impact of COVID-19 on rare disease trial recruitment
  • Utilizing patient services to support recruitment and retention, including the use of translators/interpreters, travel concierges, and home health

Later in March, Jess will also be presenting a webinar, Natural History Data and the Path to Registration in Pediatric Rare Disease Research, where she will discuss logistical challenges to gathering natural history data, and how a clinical program may hinge on the existence and accuracy of this dataset.

And finally, next week, our colleagues at Syneos Health are presenting the 3rd Annual Syneos Health Rare Disease Day Symposium, in partnership with the Rare Disease Innovations Institute – a three-day inspiring program joining patients and their families, legislators, industry experts, advocates and sponsors, for presentations and panel discussions on education initiatives, recent advancements and the future promise of cell and gene medicine, and current patient experiences with these therapies.

Find information about our rare disease expertise and insights in our Center of Development in Rare and Orphan Diseases, the heart of our dedication to helping emerging biopharma customers developing treatments for these smaller, more targeted populations.

You’ll find that every day is Rare Disease Day for us and the work we do. But at the end of every February, we take special care and pride in shining a light on this special community of patients whose diseases place them alone in a crowd.

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