Let Know Rare help connect you to specialists for your Myositis
Know Rare has helped many people living with rare diseases connect to rare disease specialists and may be able to help you too.
At Know Rare, our goal is to empower you to know your options and get access to the specialists creating a better future in rare disease.
Get to Know Our Patient Support Team
Speak to people who understand rare disease, and can help you access specialists
Laura Will
Nurse practitioner and mother to Alden, who has diffuse bilateral PMG.
Tali Wohlgelernter
Rare Ally, advocate, and mother to Sarena, who was diagnosed with Dravet Syndrome at just 1 years old.
About Our Efforts Connecting People to Clinical Trials
One of the services Know Rare Patient Allies provides is to help you explore participation in clinical studies. We created this service to help make joining a study an easier, more productive experience. Know Rare has access to rare disease clinical studies listed on the FDA’s website clinicaltrials.gov. Based on your profile, which you can fill out with the help of our Rare Allies, you can be directed to a clinical study that may be right for you. The Know Rare Allies can help you make contact with the researchers at a study center of your choice. Your personal health information and contact information will not be forwarded to anyone else, including the study sites, without your specific permission.
The goal of Know Rare is to help make it easier to connect people to clinical studies. Study sponsors help in this effort by providing the funding for our efforts and by helping us get in contact with researchers and the study sites. Though the sponsors provide funding to help us connect people to their clinical studies, please know the choice of which study you wish to participate in is up to you and your doctors.