Community News

We’ve dedicated this page to keeping you up to date on the latest SCN2A news and studies. Here you’ll be able to explore our latest articles, contribute to community posts, read other people’s stories, and much more.

Your Voice Is Important

At Praxis, we believe that if families and caregivers are a part of the research and development process it will improve our chances to successfully deliver a potentially disease-modifying treatment to patients with mutations in the SCN2A gene. To further build on the engagement with global patient groups and to help ensure we work collaboratively with the community, Praxis would like to extend an invitation to SCN2A parents and caregivers to apply for its inaugural SCN2A Caregiver Advisory Council (CAC).

The Council will serve as a group of advisors to Praxis on matters related to SCN2A disease and how it impacts those who have the mutation as well as their caregivers. Together, we will discuss topics related to clinical trial design, clinical trial recruitment, innovation, community education and much more.

To ensure every CAC engagement will be as meaningful and representative as possible, we aim to include 12 parents or caregivers who have a diverse array of experiences and perspectives.

Criteria for serving on the CAC include:

-Family member or caregiver of a person living with a mutation in the SCN2A gene

-Can commit to serve on the committee for one calendar year

-English speaking (i.e., does not require a translator)

Additional considerations for the CAC:

-Global representation

-Subpopulation diversity

-Interest in deeper understanding of SCN2A biology and drug development

We invite you to apply to share your voice and expertise with Praxis via this link, which will be open until May 14, 2021.

Any questions can be directed to patientadvocacy@praxismedicines.com. We thank you for your consideration and interest.

Sincerely,

Devra Densmore

Patient Advocacy Lead, Rare Diseases