The Common Voice of Rare Disease

The Rare Disease Innovations Institute is proud to bring you “The Common Voice of Rare Disease”, our blog which will share stories of vision, impact and success around rare disease, nationally and abroad. See below for our latest posts or ‘continue reading’.


World Sickle Cell Day 2021

Topic Education for patients are their families with Sickle Cell Description Join RDII and Piedmont Health Services and Sickle Cell Agencies on Facebook live and YouTube as we Present World Sickle Day. Our day will be full of Encouragement , Empowerment, Conversation, and Representation for everyone involved. We are so excited to be working withContinue reading “World Sickle Cell Day 2021”

Manage Self Care – Webinar Registration

Topic Self – Care for Rare Disease parents #Rare #bonnellfoundation Description Let’s gather and unwind together. The pandemic has increased the stress families in the Rare Disease community are experiencing.Please join The Bonnell Foundation: Living with cystic fibrosis as we present: Manage stress and Promote self-care.We all need some tips on how to do this!We’reContinue reading “Manage Self Care – Webinar Registration”

Seattle Rare Disease Fair

SAVE THE DATE – Friday, June 4th and Saturday, June 5th, 2021 Join Born a Hero Research Foundation and Seattle Children’s Research Institute for this year’s virtual Seattle Rare Disease Fair on June 4, and the Rare Disease Summit on June 5. The Fair and Summit aim to educate, engage, and inspire our community aboutContinue reading “Seattle Rare Disease Fair”

Phacilitate Webinar

THE EVOLUTION OF PATIENT VOICE AND ENGAGEMENT THROUGHOUT THE JOURNEY TO COMMERCIALISATION Date: 11th February 2021 Time: 4.00pm GMT  |  11.00am EST  |  8.00am  PST HOW INDUSTRY, BIOTECHS AND PATIENTS CAN WORK TOGETHER TO STREAMLINE THE ROAD TO COMMERCIALISATION In the rush to the clinic and in the hustle of running collections, manufacturing and logistics operations, theContinue reading “Phacilitate Webinar”

Rare Across America

WHENFebruary 22 – March 5, 2021 (Virtual Congressional meetings on March 3rd and 4th) WHATVirtual meetings with your Senators and Representative AND virtual advocacy events. Rare Disease Legislative Advocates (RDLA) organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. Meetings will take place virtually on March 3rd and 4th. The RDLAContinue reading “Rare Across America”