David Ross is a patient advocate and rare disease male mental mental health collaborator. David's activism began in 2017 when he was diagnosed with a rare disease called Cowden Syndrome due to being given a letter from his mother about getting tested before she passed away due to having the same condition. 

After a period of coming to terms with this he became committed to raising awareness and supporting others impacted by this condition by helping set up a support group and also applying to join the Pten Foundation International Family Council which looks to helping my rare disease community by raising awareness about Cowden Syndrome.
In 2020 he attended 3 virtual Eurordis rare disease schools and is currently on the Findacure mentoring program. His latest project has been to set up rare disease male mental mental health International zoom calls for patients and caregivers and has set up an online support group on facebook for males in 2021

David Ross, Patient Advocate

Vanessa Ferreira is a patient advocate who has committed more than 14 years of professional and personal commitment to patient associations in numerous countries and areas, such as rare diseases and cancer.
She holds an MBA from Sorbonne University Paris and a Ph.D. in cell and molecular biology. She has one sister living with a rare disease called Congenital Disorders of Glycosylation (CDG).
In 2022, she co-founded Humanized Solutions, whose mission is to support different stakeholders by implementing solutions co- created with the patient voice. She is interested in fostering
sustainable collaborations and establishing patient-centricity as a norm for better health outcomes. Since 2021, she has been Chief Engagement & Alliances Officer at Buddy service App. From 2011- 2020 Vanessa worked in the pharmaceutical sector to speed up research and medicines development in coordination with patient groups.
Vanessa Ferreira founded the Portuguese Association for CDG (APCDG) in 2010. In 2016 she implemented the World CDG Awareness Day and she co-founded CDG and Allies, the sole community- centric international research network for CDG. Vanessa's rigorous structure and successful approaches allow her to actively listen to what is essential to families and professionals, ensuring that all projects are co-created with the community. She has a proven track of scientific publications (~30 articles), focused on gathering insights with and for the CDG community. Everything she does is transferable across therapeutic indications. Vanessa initiated the World CDG organization in 2020 with various partners and CDG patient associations (worldcdg.org). She has represented patients in EURORDIS since 2010. She represents CDG as a member of the Steering Committee and Single Point of Contact (SPOC) of the European Reference Network for Hereditary Metabolic Disorders (MetabERN).

Vanessa Ferreira, patient advocate.

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