EPISODE · Dec 6, 2022 · 20 MIN
From Carer to Trailblazer: One Man’s Fight to Impact Clinical Research
from PharmaTalkRadio · host Conference Forum
When Claas Röhl’s 12-year old daughter was an infant, she was diagnosed with Neurofibromatosis Type 1 (NF), a rare genetic disorder that causes tumors to form along nerves. With no prior background in research, Claas founded NF Kinder and became an advocate for his daughter and patients impacted by this rare disorder. Claas will discuss his involvement in research, how he helped set up the first pediatric department for NF at a major medical University in Austria, and his efforts to create a national registry of NF patients. He will share lessons learned and offer insights on how best to engage carers to impact clinical research. Claas Röhl, Chairman, NF Kinder, EUPATI Austria, NF PatientsUnited with: Renata Lazarova, MD, VP Development, Pediatric Programs, Noema Pharma Learn more about the Patients as Partners EU conference at www.patientsaspartners.org
What this episode covers
When Claas Röhl’s 12-year old daughter was an infant, she was diagnosed with Neurofibromatosis Type 1 (NF), a rare genetic disorder that causes tumors to form along nerves. With no prior background in research, Claas founded NF Kinder and became an advocate for his daughter and patients impacted by this rare disorder. Claas will discuss his involvement in research, how he helped set up the first pediatric department for NF at a major medical University in Austria, and his efforts to create a national registry of NF patients. He will share lessons learned and offer insights on how best to engage carers to impact clinical research. Claas Röhl, Chairman, NF Kinder, EUPATI Austria, NF PatientsUnited with: Renata Lazarova, MD, VP Development, Pediatric Programs, Noema Pharma Learn more about the Patients as Partners EU conference at www.patientsaspartners.org
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From Carer to Trailblazer: One Man’s Fight to Impact Clinical Research
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