A new survey has been released to study the mental health needs of people with rare diseases, and patients with all rare diseases from the United States and United Kingdom are welcome to try it.

The survey is the brainchild of Frank Rivera, a patient with Stronger Than Sarcoidosis, a Long Island based support group for people with sarcoidosis. Frank has been active in the rare community for years, and saw the need for a patient driven/patient facing survey on the often understudied and mental health needs of people with rare diseases like sarcoidosis. 

To design and run the survey, Frank has teamed with Unboxed Psychology, a behavior science consulting firm based in the United Kingdom. Together they've produced a basic needs assessment survey people can answer online in about 10 minutes. While participants agree to provide basic information, participant confidentiality is secured and the data is only seen by Stronger Than Sarcoidosis and Unboxed Psychology.

According to Frank, patients need more opportunities to be heard by their support organizations about their mental health needs. "One thing I really want to do with the results is turn it into a white paper to show the patient organizations some of the unmet needs and where they have an opportunity to help more." 

The survey can be accessed through the QR code shown here or this survey link. 

If you have questions you can also contact Frank Rivera at fjr311@gmail.com