Inaugural Rare Disease Patient Advocacy Guidelines Published

PHILADELPHIA, Feb. 14, 2018 /PRNewswire/ -- Susan Stein, MPH, CEO and Founder of the award-winning Connexion Healthcare, has announced the open-access publication of rare disease patient advocacy guidelines for interaction with biopharmaceutical companies, the first publication of its kind. Affecting approximately 350 million people, rare diseases are now a global public health concern. As head of the first and only healthcare communications agency dedicated solely to oncology and rare diseases, Stein identified an unmet need where patient advocates and biopharmaceutical companies interact for the development of novel therapies. "We convened an independent panel to explore consensus guidelines and the Connexion team developed a poster that was accepted and presented at the 2017 National Organization for Rare Disorders (NORD) Rare Diseases and Orphan Products Breakthrough Summit," said Stein. The interest and response was eye opening, resulting in submission and publication of the output in the Orphanet Journal of Rare Diseases. Representatives from Connexion Healthcare, Global Genes, REGENXBIO, Spark Therapeutics, Akcea Therapeutics, the Friedreich's Ataxia Research Alliance (FARA), the Research Committee of the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), the National Tay-Sachs & Allied Diseases Association (NTSAD), and Niemann-Pick UK were authors on the publication. "Patient advocacy organizations now have free and shareable access to guidelines for clarity in day to day decision making. Our hope is that this remains a living document, updated and revised regularly in collaboration with the patient advocacy community. It is a true testament to our patient centric commitment at Connexion Healthcare to promote change for those afflicted with a rare disease," Stein added.

About the Guidelines

Principles for interactions with biopharmaceutical companies: the development of guidelines for patient advocacy organizations in the field of rare diseases, can be found at https://ojrd.biomedcentral.com/articles/10.1186/s13023-018-0761-2 or request a copy at [email protected]

About Connexion Healthcare

Connexion Healthcare is an award-winning, full-service thought leader engagement and education agency founded in 1999. Connexion is focused on educating healthcare professionals, advocates, patients and caregivers by providing accurate and clear scientific exchanges, and combining our dedication to scientific excellence with a thorough understanding of business objectives and strategies. Connexion is a certified woman-owned business and member of the Women's Business Enterprise National Council (WBENC), with main offices located in Philadelphia, PA. We invite you to visit our website at connexionhealthcare.com and tweet us @ConnexionHC.

CONTACT: 
Susan Stein, MPH 
CEO, Connexion Healthcare 
Phone: 215.944.9405 
Email: [email protected] 
Twitter: @CONNEXIONhealth

SOURCE Connexion Healthcare