Our Host

Bojana Mirosavljevic, Ph.D. – Ergomed, Patient Engagement Officer

Bojana’s role is to ensure that the patient’s perspective is always considered during a clinical trial. Educated as a chemist and embryologist, in 2010 Bojana founded and is still president of an association for children with rare diseases in Serbia. In 2013, Bojana lost her daughter Zoya to a severe and rare form of Batten disease, and today, Serbia has Zoya’s law, for the prevention and diagnosis of rare diseases, which has saved more than 3,000 lives.

Our List of Speakers:

Amanda Mortensen – BDFA (Batten Disease Family Association), Chief Executive

Amanda has been working in the voluntary sector for 15 years, setting up community groups and then going on to chair the local Parent Carer council in Brighton & Hove. Amanda’s background is in family support and she has managed a peer befriending service across Sussex for both national disability charity Scope and local charity Amaze Sussex. Amanda was previously Chair of trustees of the BDFA. Amanda’s inspiration for her work in the sector is her eldest child. Livvy, now 20, has Lennox Gastaut syndrome and was also recently diagnosed with Phelan McDermid Syndrome (a mutation on the Shank 3 gene) through the 100,000 genomes project. Livvy lives a full life despite her profound disabilities! Amanda has a particular interest in education and is Chair of Governors of a local primary school. Amanda has recently become a Patient and Public Voice member of the Genomics Test Evaluation Working Group that feeds into the Genomics CRG (clinical reference group) here in the UK. Prior to working in the voluntary sector, Amanda’s career was in journalism, having spent over 20 years as a writer and editor for national publications. Amanda is also studying for an MsC in Voluntary Sector Management at City University.

Elisa Seeger – ALD Alliance/Aidan Jack Seeger Foundation, Founder

After losing her son, Aidan to ALD in 2012 at the age of 7, Elisa started this foundation in his honor with the primary goal of having ALD Newborn Screening passed in every state. New York became the first state to start screening for ALD with the addition of “Aidan’s Law” in 2013. Since then, Elisa has worked to help other states add ALD by traveling across the country to speak at newborn screening committee meetings. Elisa had federal bills introduced in 2016 which would mandate newborn screening for ALD nationally. This is still a work in progress and as of 2020 has changed this directive to include all diseases added to the federal recommended uniform screening panel. The goal is the eradication of “Death by Zip Code”, EVERY baby born in the USA should have the same chance at a normal, healthy life. In 2020 the House included language in the appropriations budget and recognized the problem of funding as a delay to implementation. In addition, the foundation hosts an annual ALD Standards of Care meeting every January has created an ALD Parent’s Guide with the help of clinicians and parents in the community. Through the work of the foundation, there were consensus guidelines created for MRI monitoring after newborn screening. Collaboration is key – Elisa takes part in many other groups including serving as the co-chair of the Every Life Foundation Newborn Screening Workgroup, the Hunter’s Hope steering committee, Global Leukodystrophy Initiative, and the United Leukodystrophy Foundation patient advocacy group. In 2020 we have decided to change our name to ALD Alliance to welcome other families to join our efforts in the hopes of helping to change the course of ALD.

Tetiana Zamorska – Debra Ukraine, International NGO “Dermatologists for Children”, Head of Epidermolysis Bullosa Patient Care Center

Tetiana is a lawyer with more than 18 years of a successful professional career in multinational audit and consultancy firms. Her life changed with the birth of her son Andrey in 2002 with rare genetic skin and tissue disorder called Epidermolysis Bullosa (so-called “Butterfly children” for their extremely fragile skin and tissue). Since then Tetiana has been running her patient advocacy and charitable activities. In 2011 she founded and headed the DEBRA UKRAINE Patient Care Unit for EB Patients as part of the International NGO “Dermatologists for Children”. In 2014 she co-founded the Rare Diseases of Ukraine NGO with her colleagues who are also Moms of children with various rare diseases. The RD Ukraine is the national alliance at EURORDIS. Tetiana is a EUPATI fellow. In 2015-2016 she studied the course “Medicines Research and Development” at EUPATI and became a qualified patient expert. In 2019 she led the Charitable Foundation “Orphanni Synytsi” which supports Ukrainian people living with rare diseases. For many years she has been advocating for orphan patients’ rights and conducting various advocacy training. In 2020 she launched the Orphan Help Line together with her colleagues to provide information and consultancy, legal and psychological support to patients with rare diseases of Ukraine. Tetiana participates in annual international and European conferences on rare diseases, including those organized by EURORDIS. She is a member of the Working Group at the Ministry of Health of Ukraine dealing with procurement for EB patients and the development of standards of care for EB. Maintains strong ties and cooperation with clinical experts, manufacturers of medicines and medical devices, business associations, and socially responsible businesses.