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To the Global Genes Community:

I'm reaching out to you all today, as interim CEO of Global Genes, to introduce myself, shed some light on the path forward, and to thank you for all you've done and are doing to support our shared mission: eliminating the burdens of rare disease for patients around the globe.

While I'm new to this role at Global Genes, I'm not new to Global Genes. I've been involved with Global Genes for nearly a decade, have co-chaired the RARE Corporate Alliance for about half that time and have been on the board for the past several years. Through these interactions, I've had the chance to work quite a bit with the talented team at Global Genes, as well as with some of you.

The first question that comes to mind when an organization changes leadership is often "Is everything okay?" The answer, unequivocally, is Yes. As Kimberly alluded to in her letter to this community and the board reiterated in its follow-up message, despite this having been a really challenging and tumultuous time in our world (with many associated implications for our rare community), we've stood strong, and together.

As a result, and thanks in immeasurable ways to your continued support, we've come through to this point in very good shape and our impact is growing. We've managed conservatively only where we felt we absolutely had to. We've brought more members into our RARE Foundation Alliance and RARE Corporate Alliance than ever. We've successfully pivoted to a virtual world and have been able to connect with more patients and advocates around the world through our RARE Patient Advocacy Summit, RARE Drug Development Symposium, RARE on the Road events, and other online forums. And we've also successfully launched new programs where we saw real and urgent unmet needs (e.g., around COVID-19 and continuity of care; equity diversity and inclusion; and capacity building for communities around data stewardship and other emerging needs).

Is there room for improvement? Of course. In particular, we are focused on revamping and building out our patient engagement capabilities, as this is and always has been at the heart of what Global Genes is all about. We are adapting our model and offerings to reflect the realities of operating in a virtual world while addressing the need to scale to meet diverse and global needs (leveraging technology and data), but always with a focus on maintaining the human-driven, personal touch that is our hallmark.

Moving forward, and in short order, you can expect to hear more from us about our plans to strengthen and scale existing core programs, and several new initiatives we're launching (one such program, with Rady Children's Institute for Genomic Medicine, was just announced earlier this week). We're already in conversations with many of you about your needs for the coming year, and we are grateful for your many contributions - of time, talent and resources.

If, at any time, you have questions or want more information about how you can help, please don't hesitate to reach out to our team or to me directly. My email is craigm@globalgenes.org.

Again, thanks to all of you for your continued support and partnership! 

Sincerely,

Craig Martin

Disclaimer: The information in this email is provided as a service to the public and offers general information for educational and informational purposes only. The content in this email is not intended to be and should not be relied on as medical or health advice. You should speak with your health care team if you have questions about your specific condition. For more information, please view our terms and conditions.

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Disclaimer: The information in this email is provided as a service to the public and offers general information for educational and informational purposes only. The content in this email is not intended to be and should not be relied on as medical or health advice. You should speak with your health care team if you have questions about your specific condition. For more information, please view our terms and conditions.

Having trouble viewing this email? View it in your web browser

Disclaimer: The information in this email is provided as a service to the public and offers general information for educational and informational purposes only. The content in this email is not intended to be and should not be relied on as medical or health advice. You should speak with your health care team if you have questions about your specific condition. For more information, please view our terms and conditions.

Having trouble viewing this email? View it in your web browser