RARE Global Advocacy Alliance Member Spotlight: David Simon Ross

November 30, 2022

David Simon Ross

David Simon Ross – GAA Member Spotlight November 2022

Organization(s) you represent:
Rare Disease Male Mental Health Group

Disease Affiliation:
All Rare Diseases

Organization Mission:
To have mental health treated the same as physical

What led you to the rare disease community?
Diagnosis of a rare disease

What do you think are the areas that are lacking in the community (to your org or in general)?
Support for mental health for living with a rare disease

What are some of the pain points?
Patients unsupported and isolated. Mental health support is not there for patients.

What are your areas of expertise?
Mental health, clinical trials

Please describe any major milestones your organization has hit or has coming up that you are proud of.
Men from all continents attending meetings. 23 men attending the last rare disease day meeting. Just made a 13 min film about men’s mental health which is on The Disorder Channel.

What is your hope for the future for rare diseases?
Everyone impacted by a rare disease is supported with their mental health whilst we wait for treatments and cures.

Learn more about the Global Advocacy Alliance. If your organization is already a member of the Global Advocacy Alliance and would like to be considered for a spotlight in a Global Genes monthly newsletter, please fill out the Global Advocacy Alliance: Member Spotlight Form.

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