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Welcome to SCN2A Insights bringing you the latest research and clinical updates on SCN2A and genetic epilepsy from around the world.

Dr. David Cunnington: Welcome to this episode of SCN2A Insights. I’m David Cunnington.

Ms. Kris Pierce: And I’m Kris Pierce. In this episode, we talked with Kimberly Haugstad, who is the CEO of Global Genes. Kimberly commenced this role in September 2019. And Kimberly walked us through the history of Global Genes and also her vision looking forward. I had the honour of attending my first Global Genes summit in 2019 where I connected with some new and old friends and learned so much from each encounter.

Global Genes is committed to supporting the rare disease community globally at the level at which they need. I’m part of the RARE Global Advocacy Leadership Council which is a team of rare leaders from around the world who advise and offer a global perspective to the Global Genes programs. Global Genes offers many programs, organizations and individuals such as Data DIY, RARE on the Road, the RARE Compassion Program, RARE Patient Impact Grant and so much more.

You can become a Global Genes Alliance member by connecting with them on their website at globalgenes.org. Welcome, Kimberly.

Kimberly Haugstad: Thank you. Glad to be here.

Dr. David Cunnington: So what led to you working at Global Genes?

Kimberly Haugstad: Oh, it’s been a journey, that’s for sure. Actually, I have been in the rare disease space for a little more than 10 years. I started out early on in about 2008 in the bleeding disorders arena in the United States and worked for the Haemophilia Federation of America. And over the last decade or so, did mostly work here in the US but had started about three years ago just tiptoeing into what was happening just around the world out there. But you know, honestly, I had the global opportunity to work in a disease area and in the rare disease area as a whole which was really appealing.

And so, when I got a call, it was hard to leave the space that I have been in for quite some time in a specific disease but the opportunity to really deepen and grow my breath in rare as a whole was incredibly appealing and to do that globally is just such an incredible honour. So, I jumped and dove into Global Genes in September of this fall, right before our annual summit which was an amazing experience, an immersion like no other.

Dr. David Cunnington: And how did you end up working in Haemophilia, what was your background prior to that?

Kimberly Haugstad: Well, I’m a rare mom. Honestly, I have a son who is a teenager now who has severe Haemophilia B, so the rare form of haemophilia, a rare disorder of its own. And when he was a baby, I had been volunteering quite a bit and was– actually, I was as a business consultant and had a small practice of my own and found that I was volunteering a lot and really interested in what was happening from a policy standout here in the US and just from a healthcare standpoint, et cetera, et cetera.

And the organization at that time had approached me and really it wasn’t non-profit, you know of a non-profit mindset but decided to take it on and figured maybe a year or two into it I would find my way back to consulting. But the reality is I fell in love. The rare community is like no other. The depth of passion and compassion and commitment within rare just really appealed and Haemophilia, part of that group, you just fall in love with the family and the process and the hope that is out there every day.

Dr. David Cunnington: It’s a pretty familiar story and it’s something we’ve seen in the rare disease community too and within our own gene disorders or SCN2A that often it is the parents you know literally we’ve got skin in the game. We’re highly motivated to pull people together and work towards cures that can often be the drivers and the impetus that could bring skills that we have in our own professional lives and bring them to this area.

Kimberly Haugstad: I really think so. Yeah, I was an MBA from an educational standpoint and I think the thing that we bring as parents is that we truly want to see that horizon be better for our children and we are utterly united on that plane and there’s just no question.

Ms. Kris Pierce: Global Genes has been around for around 10 years now, so what’s the history of Global Genes and the evolution of it as an organization?

Kimberly Haugstad: I think the compassionate story of Global Genes started, again, about a decade ago. And the founders really had– really didn’t have a rare condition in their family but they had friends who had children who had concerns and issues in the rare space. And they saw at that time just the lack of true awareness and the lack of capacity building in education, particularly in the educational space. We all know knowledge is power, we see that again and again. I think bringing education, capacity building and truly bringing and driving awareness is where we started.

And where we really point a lot 10 years, really digging in and trying very, very hard on a global basis to drive awareness to the concept of rare disease and the fact that we do exist and we’re a huge population over 360 million of us. But I think as we look forward and look into this next decade, I think we can move beyond awareness and really think now about inclusion. And a global stage really takes a firm look at how we all can be a part and wherever you are on the planet, really be a partner of the rare disease community.

Ms. Kris Pierce: Last year, I was appointed to the global advisory group for Global Genes so that’s given me the opportunity to not only have a voice from an Australian perspective but also work with other rare disease advocates around the world which had been really enlightening for me. And I’ve certainly learned a lot from them and we’re trying to add that international voice and drive, that international landscape a little bit with Global Genes. So it has been really a privileged position to be a part of that group.

Kimberly Haugstad: Kris, we’re delighted to have you, quite frankly. And that group is all about partnership and working together. I mean families are truly experts. And we’re really pleased that you’re a part of that group.

Ms. Kris Pierce: Where is Global Genes heading? What’s your mission and your vision for Global Genes over the next say, five years?

Kimberly Haugstad: In overall perspective, in coming into the organization last fall and taking a look at where we’re at and I mentioned awareness earlier. And I think that we’ve got a really good positioning and where it is on the radar, in investor perspective or from a clinical biotech perspective at clinics and whatnot, I mean there still are so many people that needed a diagnosis of course, but certainly, there is, you know it’s heard these days.

I mentioned inclusion before. From a very purposeful standpoint, I think we need to be inclusive on a global basis and really meet people where they are and really think about supporting and building capacity and gaps in the work that we do. There again are so many people around this planet who don’t have resources and we are looking at building out this full platform from a technology standpoint to be accessible in multiple languages that will come over the next few years. And also, really building out the education and capacity work that we do, to be more inclusive, more in recognition of the financial implication involving this [0:07:25] [Phonetic] rare disease just like social implication.

Part of our goals here though is to not be-all to end-all. We’re really committed to working with our local and in-country organization to support efforts that you’re doing and you have unique challenges in individual countries, cultural competencies that we are a failure of and it’s just so incredibly important for us to not take over and try and be all things to all people but to be support resource. There’s nothing else but convenor and collaborator to really provide some global connectivity is on our radar. And we’re really excited about the future of where we can go.

Dr. David Cunnington: So in that collaborative role, what’s an example where collaboration has been able to get something done as individual groups that just might not have been possible?

Kimberly Haugstad: Oh gosh! Where do I start? I think collaboration and convening is the key tool to what we do. Our alliances are a great example of collaboration. We do have also three, three alliances at this point. We have a foundation alliance of which you’re a part and we appreciate that very much. We have over 600 organizations that are part of that collective foundation alliance of organization. And we regularly meet and share best practices and other Facebook page that comes together and really get involved in collaborative sharing.

In addition, we have a corporate alliance at Global Genes. And our corporate alliance is made up of many industry partners from all different parts of industries and gaining their insights and knowledge is incredibly important and valuable in our coming together. And just recently in the last year, we have started the research alliance so kind of the third leg of this tool to bring that research voice into the picture.

But that’s just one piece, I think Data DIY, if you heard about our Data DIY program over the past year, we launched, a four series program called Data DIY. And especially this program is – what it’s all about and you might guess data and how to use– how to effectively use data from a research standpoint. And so the first in the series is all about informed consent, really helping the patient, patient groups, individual patients understand their role in the research process. But number 2, 3 and 4 has been all about the foundation and really helping the foundation learn and understand how to build registries and how to build good datasets, how to come together and convene as partners to collect good data.

Ultimately, as our agenda here, really working towards speeding up the process of the process. I could go on and on in terms of collaboration. And recently on the international front, about a year ago actually started working with India. And with the US group that represent India first and then expanded into India proper and we convened a meeting about a year ago of a bunch of groups in India all around the topic of rare groups that were focused on RARE work. And again, the convenor came into play and we really pulled the group together but the group themselves have been able to work so beautifully and effectively since. So, you know again, I probably could go on and on but it’s incredibly colourful the opportunities we did together and collaborate.

Dr. David Cunnington: So in a collaborative sense, so for a lot of individual foundations, there are those fixed costs or sort of resources of setting up the registry and the infrastructure and those sorts of things. So how could Global Genes help those individual organizations and prevent some of that duplication of costs and duplication of work?

Kimberly Haugstad: I think that very much goes back to some of the work and research that we’ve done to pull those Data DIY programs together on our website. We have the workbooks from each of those events and some of them go into great detail outlining really clear best practices and how to engage. We have intentions based on the project. We did videotape everything that we’ve done in the past year and we will be developing e-learning and online tools to provide folks on a global basis with this information. We are in the process of translating so we’ll do, we’ll translate into Spanish first and then to where we can go overtime in additional languages.

Dr. David Cunnington: One of the challenges with international collaboration is the different rules, rigs in different countries. How do you going to try and manage that across different jurisdictions understanding how research has to be regulated and controlled in different countries and how drugs may be bought to market in different countries.

Kimberly Haugstad: So, I think it’s an incredible point and I’m so glad you brought that up and it speaks back to collaboration. I think we would be pulling ourselves to suspect that we are going to be the absolute expert on all things. So, collaborating– this is where collaborating with industry partners, collaborating with organizations in country, collaborating with researchers across the globe, all becomes incredibly important so we can pull back collective knowledge together to go do it.

Ms. Kris Pierce: We’ve talked about collaboration and bringing groups together, not only across countries but across rare diseases which is fantastic. I think you know as you say, it’s an essential part of getting the results that, as rare diseases families we want to say. So what’s your vision for Global Genes in the international space? You sort of touched on things that Global Genes want to do? How far can we take that because we’re excited in Australia to see where that can go?

Kimberly Haugstad: So, I think it’s a step by step process but I think it’s all about again, working together. We don’t need to be expert in your country. We need to work with you and bring the best practices that we have and we continue to learn across the globe and make them accessible and available to you. So again, it goes back to that partnership. We need you to be strong in your individual country rather than be the person or the organization that’s coming in to try to take over. We see our role to come in and help you become stronger and really be to further strengthen your country.

Continue to check us out. We do have a rare disease development symposium coming up in June at the early part of June the 12th that is combination – a combination of both physician researchers as well as patients coming together that will be at the University of Pennsylvania coming up in June. And then of course, on an annual basis, we have our summit. The summit is at the end of September and we invite you to come from September 21 to the 23rd is our summit, which will be in San Diego, California. And we’d love to have you as well as thousands of your friends in the rare space come. We anticipate quite a crowd and could be a great experience. It is such a collaborative authentic experience to really connect with other folks in the rare space, it’s like nothing else.

Ms. Kris Pierce: I had the pleasure of coming last year for the first time and I was on such a high for such a long time afterwards. As you say, it’s such a unique experience and not only the collaboration but the willingness to share information like everyone I spoke to I learned something from. And everyone that I spoke to was willing to share their resources, their knowledge, their experiences and it really was an experience like no other as you say. And I would encourage anyone that has the opportunity to go, you’ve got to do it at least once and San Diego is a beautiful city to spend a few days in and highly recommend it to people to make the time to get to that meeting.

Dr. David Cunnington: Thanks very much for your time. That’s really great.

Kimberly Haugstad: Thank you.

Dr. David Cunnington: So, it was really interesting to hear from Kimberly and great to hear the Global Genes’ approach to trying to support organizations right around the world.

Ms. Kris Pierce: Global Genes, as we heard from Kimberly, is looking to support countries at the level at which they need that support so through resources. I know they took a trip to India recently that we heard about at the Global Genes summit where they took some programs and staff over there to support India in developing more presence in the rare disease space in India.

Dr. David Cunnington: And some of their resources are really good in guidelines for developing alliances between groups in different countries as well as resources for developing individual foundations. So, thanks Kris, for organizing that interview, that’s really insightful.

Ms. Kris Pierce: Thanks for tuning into this episode.

Dr. David Cunnington: You can find SCN2A Insights on any of the podcast streaming programs or podcast apps and also on Apple podcast. And follow SCN2A Australia on social media @SCN2A Australia. Thanks a lot.

Ms. Kris Pierce: Thank you.

This podcast is not intended as a substitute for your own independent health professional’s advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider within your country or place of residency with any questions you may have regarding your medical condition.