Patient Advocacy: Rare Diseases 101 is approved for 1.0 Ethics CE by the Patient Advocate Certification Board to satisfy the requirements for Board Certified Patient Advocates (BCPA) Through October 23, 2024.

About This Program

A rare disease is generally considered to be a disease that affects fewer than 200,000 people in the US at any given time. With more than 6,800 rare diseases, an estimated 25-30 million Americans are living with a rare disease.

The presenters will share personal experiences and case studies to highlight the unique challenges and barriers to securing diagnostic and treatment information on rare diseases, as well as identify the best organizations and websites to assist patients, families and advocates start their journey.

About the Presenters

Alex Fielding, Rare Disease Patient, Chemical Engineer & Business Leader

Alex was diagnosed in 2014 with Friedreich’s Ataxia, a debilitating, life-shortening dege nerativeneuro-muscular genetic disorder affecting 1 in 50,000 Americans.

Alex isn’t one to dwell on denial and anger. With the love and support of family and friends, Alex quickly applied his technical background to become familiar with his disease, the Pharma industry, FA research and all the relevant literature on FA.

For Alex, the quest for knowledge led to acceptance and hope for a treatment or cure. True to his nature, he became an Ambassador for FA, supporting newly diagnosed FA patients and their families and shared his FA journey at national symposiums. Alex has participated in numerous clinical trials and currently serves on the Board of Friedreich's Ataxia Research Alliance (FARA). “At this point in my life, FA is an asterisk on everything I’ve accomplished and the experiences that I enjoy. It won’t keep me from achieving my goals, but it may alter the path I take to get there.”

Sabina Kineen, Rare Disease Patient, Caregiver & Advocate

Sabina is passionate about sharing her unique perspective and journey living as a patient and caregiver living with the diagnosis of an inherited, rare disease. By educating others on her own life experiences, including those in clinical trials, she has sought to actively support both patients and industry professionals in order to build bridges and encourage health equity and patient engagement.

Sabina is a self-employed Patient Advocate since 2016. She was recently appointed as a Patient Advisory Council member with Lightship, a patient-centric organization designed to increase access, choice and equity to clinical trials. Sabina also serves as a Fabry Champion with Amicus Therapeutics and is a highly regarded public speaker at national & international rare disease conferences promoting the voice of rare patients.

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