Alone We are Rare, Together We are Strong. Helping the 30 Million Americans Affected by Rare Diseases
By Sarah Ford on April 23, 2015
Any disease affecting fewer than 200,000 Americans is considered rare, and there are nearly 7,000 such diseases affecting nearly 30 million Americans.
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Through education, advocacy, research, and service, NORD is committed to the identification, treatment, and cure of rare disorders.
In this Q&A, Director of Development, Derek Gavin, shares his role in executing NORD's mission. While Derek's official role is the Director of Development, his unofficial role is parent advocate. This February marked the 14th anniversary of his son Trevor's passing. Being born with Metachromatic Leukodystrophy, his life expectancy was 3-5 years, but Trevor lived miraculously to 2 months shy o fhis 10th birthday.
Q&A With Derek Gavin:
What attracted you to this job & particular cause?
Since my son's passing I have wanted to get involved in advocacy for people with rare diseases and their families. It took many years to overcome the devastating pain and emptiness of losing my son. I couldn’t talk about him without sobbing like a child.
We were introduced to NORD as a resource upon getting his diagnosis. The people were nice and helpful and pointed us to another patient organization that represented the Leukodystrophies.
As time went on, the need to advocate and give of myself overcame my emotional tenderness such that I could actually work professionally in this community which would help me make the most impact.
How are you making an impact through your work?
I was the owner of a small company when an opportunity opened at NORD. As the director of development, my overarching responsibility is to bring revenue into the organization form both the fundraising, individual giving side, and the industry side providing programs to industry that benefits industry and our patients.
It has been a blessing for me personally to work in this role as NORD is a truly independent advocacy charity and has been doing amazing work on all fronts for 32 years.
Many of the programs I promote to industry help the patients directly and in that way inspires hope and community. One of the overarching feelings one gets when diagnosed with a rare disease is one of isolation and the feeling of being alone. NORD’s motto “Alone we are rare, together we are strong” exemplifies the mindset of the organization and some of the goals of its programs.
What advice would you give to anyone with a similar position, or to someone interested in working for a nonprofit like yours?
I would suggest to anyone with or without a similar tie to rare disease who wants to get involved to follow their heart as tempered by their mind. Reach out to NORD, or if there is a specific disease state represented by a patient organization, reach out to them and see how you can assist them in making a difference.
What excites you most about your organization's work right now?
The NORD I work for is the “New NORD” under new leadership that brings new technology, programs, and a new strategic vision to this organization. We have built a rare disease registry platform that has a longitudinal natural history study component so needed by the FDA in understanding the impact of rare diseases. This data will also assist the FDA in faster therapy approvals. This is one of the advancements of the new NORD.
Our thanks to Derek Gavin for sharing his time and expertise with us! To learn more about the impact NORD is making, click here to visit their website and connect with them on Twitter @rarediseases, Facebook, and blogs and newsletters found on www.rarediseases.org. Click here to support their work with a donation.
The primary goal for any nonprofit is to get people to support that nonprofit’s cause so they can make an impact. But, behind each of those causes are hard-working individuals, actively involved in making that impact happen. Through our Making Impact Blog Series, we’re going behind the scenes with America’s Charities member organizations to learn how they’re making impact happen and share insights and advice from the staff and volunteers supporting these initiatives.