Welcome to Women in RARE: Next Gen. Here, we shine a spotlight on female rare disease advocates of the future. First featured in the Women in RARE edition of RARE Revolution Magazine
About you
I am a 24-year-old Afghan Sikh from London. As someone with multiple chronic illnesses I am passionate about raising awareness and being open on “taboo” topics in the South Asian community such as periods and the use of contraceptives as medication. Being a patient advocate I partake in research through events, discussion, interviews, volunteering, patient groups and as a representative on projects. At work I am also part of the Disability Staff Support Network where I work alongside the EDI Council on projects for our company to become more inclusive. I love travelling, coffee, music and have recently found a love for spirituality.
Your biggest motivation
A few keywords to summarise my motivations. Breaking stigmas. Advocating. Functional medicine. Awareness and knowledge. Creativity. Open box thinking.
Your greatest achievement
Being part of PIIOS study as a student.
What’s next to strive for?
Multiple projects in the works; Research project. EDI specific projects at work. Showing up at events. Participating in different forms of research.
Advice to other up-and-coming advocates
Share your story and be open about your experiences. Your story can help someone feel less alone in the world. Don’t be afraid to be loud in the world of advocacy because your opinion is valuable. Put yourself out there for opportunities.
The tide will have turned for the rare disease community when...
“Have you tried yoga?” and “You are just anxious” are not common phrases.
Socials
Instagram: @itscomplicated21
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