Dec. 2, 2019
Posted by Valaree DonFrancesco
Do you have questions about gene editing and how it may advance the treatment of people with rare diseases? Much has been written lately about the promise of CRISPR and other gene-editing tools as future treatments for many rare diseases.
NORD is creating a new educational video on this topic, and we want to be sure it addresses the questions that are most important to patients and caregivers across the rare disease community. For that reason, we are asking patients, caregivers and leaders of patient organizations to share their thoughts with us.
Since gene editing is potentially helpful in treating many different rare diseases, we invite everyone across the spectrum of rare diseases to share their questions, hopes and concerns about this approach to treatment. You can do this quickly and easily on a special form we’ve created for the NORD website. All responses will be confidential.
For more than 35 years, NORD has been the primary provider of information about rare diseases and related topics to patients and caregivers across the spectrum of the 7,000+ rare diseases. In fact, when the patient advocates who established NORD discussed next steps – after their successful advocacy for the Orphan Drug Act – they all agreed that education should always be one of NORD’s top priorities.
As a result, providing educational resources that are accurate, relevant and truly helpful to the intended audience is an important part of NORD’s mission.
You can help to ensure that the information NORD provides about gene editing addresses the most timely, relevant and frequently asked questions. Please take a minute today to fill out this brief form. NORD will aggregate the responses to identify the questions most frequently asked by patients and caregivers across the community.