Despite a familial history with rare disease, Eden Lord was set adrift upon receiving a diagnosis for her daughter. Determined that no other parent should feel that way she created an organisation to connect the global rare disease community to identify needs and develop innovative solutions

RARE entrepreneur series: meeting the beating hearts behind the RARE brands

For every person who is affected by a rare disease, there is a community of their friends and family who are also impacted. 

At The Dash Alliance, we make it possible for stakeholders across the globe to connect in pursuit of common goals. From our inclusive virtual events to our virtual ecosystems, we connect the global rare disease community on innovative platforms that lead to faster diagnoses, treatments, and cures. 

We’re more than a “patients-first” organization–we’re patients, too.

1.

What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

In 2009 we welcomed our second daughter, Cambria, into the world. At four months of age, Cambria experienced an adrenal crisis that almost killed her. We spent a week in Children’s Mercy hospital located in Kansas City, Missouri. At the end of that week, we were sent home with a slip of paper that instructed us to wake Cambria every one and a half to two hours, feed her apple juice with corn starch to keep her from crashing again, and to schedule an appoint with endocrinology. That was all the support we received.

At that point I was determined to try and provide resources for other families so they would never have to go through the same experience that we went through.

2.

How does your business benefit the rare disease community?

We have always worked to bring innovative solutions to patients where they are. When we launched the first virtual event back in 2018, our goal was to be inclusive and accessible. Everything we do centres around those goals.

3.

What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

We’re fortunate to have had caregiver experience before our daughter was diagnosed. My grandfather and dad had rare conditions that were diagnosed later in life. That, coupled with our experience with our daughter, helped us to form our mission and vision for our company.

If you are wanting to start your own organisation, my advice would be to do your homework before you set out on the quest. Set your goals for what you want your company to accomplish. These goals will most likely change as your life experiences change. I see a lot of organisations start up with parents at the helm and the goal is to make their child’s quality of life better. I think this is an incredible motivator! Create your business plan, develop a charter, really think about what you want to do and then start looking at how you are going to accomplish it.

As far as support, it’s been key to find partners who share the same vision and mission as we do. Those partners include organisations for industry, other non-profit organisations, and people with a passion about caring for the rare disease community.

4.

How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

Every member of our team is directly affected by a rare disease diagnosis as a patient, caregiver, or both. While the work we do is demanding and at times overwhelming, we understand that the circumstances of living with a rare disease can be challenging. We’re lucky that everyone extends quite a bit of grace to each other when it comes to rough patches and everyone supports each other.

5.

What advice do you have for someone starting their own business?

Seek out tools and resources to help with the mechanics of launching your own business. Don’t reinvent the wheel. There are incredible resources out there and people who are more than willing to help out a new initiative.

6.

What are the most rewarding aspects of establishing and running your own business?

It’s been a pleasure and an honour to serve other rare disease families in the community. We are passionate about the work we do and when you hear and see the results of your work, you realise there is no amount of money that can give you that sense of purpose.

7.

What would you consider to be the greatest achievements of your business thus far?

I think the greatest thing has been seeing the results of helping organisations make connections with other patients, caregivers, doctors, and professionals that would have never been possible without the work we have done. I would also state that our business has also benefited Cambria and her medical condition. By helping other people, we have also been able to help our daughter. That is an incredible feeling of accomplishment.

8.

What advice would you give someone considering working in the rare disease space?

Listen before you launch. Don’t assume that because you had experience somewhere else that you have all the answers. Each rare disease patient is unique, and every organisation has a unique culture. Look at the communities. Talk to people and by that I mean ask questions and listen. Be sure that the values of the organisation(s) you are looking to align with are the same values and standards you hold in your own life. No one will have your level of passion about your situation. No one will have all the answers. You will have to be patient. Rare disease is a marathon, not a sprint–unfortunately.

9.

What are your hopes for the future of your business?

We have some exciting projects on the horizon for 2022! Bottom line, we are not going to do things the normal way any longer. Our community is amazing about getting together, lifting each other up, and talking about needs to be accomplished. Our 2022 will be about removing the barriers to a lot of the challenges that have prevented the rare disease community from having a voice and putting control in the hands of the patients. Obviously easier said than done, but we are determined to move the needle in 2022 in a positive direction around the world.

10.

If you hadn’t founded The Dash Alliance, what was Plan B?  What did your 10-year-old self want to be?

Prior to launching The Dash Alliance, I spent over 15 years in online education, creating curriculum and developing certificate and degree programmes. I worked on my doctorate in education and looked toward higher education as a way to help people accomplish their life’s dreams. For me it was about always striving to learn something new, to keep growing and to raise a family of my own.

Having a child with a rare disease changes you. It makes you realise that what you thought was important is really just a matter of perspective in the moment. It makes you pull up stakes and move half a continent from where you grew up because your child’s quality of life has a chance to improve. My heroes are these rare disease kids, my own and others. They are strong, fearless in the face of the giant as they press though the pain and uncertainty of what tomorrow holds. Their strength gives us hope.