Celebrating our rare disease stars: an interview with young patient advocate Danielle DrachmannLuglio 2022
Each year, the EURORDIS Black Pearl Awards recognise the outstanding efforts of individuals, organisations and companies who dedicate their lives to making a difference for the rare disease community. Each unique in their own way, the 12 award categories are united in one common goal: bettering the lives of all people living with a rare disease.
As nominations open for the next EURORDIS Black Pearl Awards, we invited Danielle Drachmann — recipient of the 2022 Young Patient Advocate Award and founder of Ketotic Hypoglycemia International (KHI), to share her reasons on why you should take part to help shape a brighter future for families impacted by a rare disease.
You were the recipient for the 2022 Young Patient Advocate Award — what impact did the award have on your work as a patient representative and what did it mean to you?
First of all: Getting the 2022 Young Patient Advocate Award, was a huge honour for me personally, but also the families and experts I work with. Furthermore, the award was also a milestone of unspeakable magnitude for our specific rare disease. While idiopathic ketotic hypoglycemia is currently defined as a collective set of symptoms not related to an underlying pathology, severe IKH should still be considered a rare disease entity in and of itself. Receiving the award is supporting our goal to get the severe scale of idiopathic ketotic hypoglycemia recognised as a rare disease entity on its own.
Also…. I have a full-time job, on top of leading a global reaching rare disease organisation. When my children grow up, and they ask me, why I was so absent (which I am sure they will….), I will be able to show them the award, and tell them that I did absolutely everything I could to find a cure for them. Everything.
Why is it important that achievements in the rare disease community are recognised and celebrated?
As I said in my speech at ECRD 2022: I am an expert by necessity, not an expert by choice. Currently, the lack of funding into rare disease puts the responsibility of research and advocacy upon the shoulders of overburdened rare disease experts, and overworked moms and dads, often on top of existing working hours and battling constant caregiver duties.
Recognising and celebrating the fiery souls who have carried the unfunded research and advocacy burden so far, is crucial to ensure the fiery souls do not burn out.
Hopefully, the European Commission will hear our plea soon, invest in infrastructures to support co-created health research in rare diseases, and open up for substantial funding and resources specifically for rare disease research.
Why should young people submit a nomination or enter themselves for a Black Pearl Award?
Because you are worth it. Because your friend, colleague or doctor is worth it. We need to rise to the occasion and claim our and each-other’s awesomeness. By doing so, we are not only celebrating ourselves, our friend, our doctor, our rare disease – we are creating awareness, which is helping us reach the ultimate goal: improving the lives of families impacted by rare diseases.
And maybe that nomination will lead to just that awareness, to the right people, who have the key to a cure. My “I have received an award” LinkedIn post has reached more than 10,000 people. Imagine social media as a stage. You are standing on a stage, and 10,000 people are listening to you.
Watch the interview excerpt below, and submit a nomination to the Black Pearl Awards to celebrate your star of the rare disease community!