Rare Disease Day: Q&A with Pharmacy Awareness of Rare Diseases (PARD) at the Leslie Dan Faculty of Pharmacy

Rare Disease Day is a global initiative aimed at raising public awareness and education about the challenges faced by those living with rare diseases. Coordinated by the National Organization of Rare Diseases alongside its country-specific partners, including the Canadian Organization for Rare Disorders (CORD) in Canada, this event takes place on the last day of February each year. In 2024, Rare Disease Day falls on the rarest day of the year, February 29, making it an even more notable occasion.

At the Leslie Dan Faculty of Pharmacy, University of Toronto, PharmD students have come together through one of their newest student clubs, Pharmacy Awareness of Rare Diseases (PARD), to shine a light on the complexities and challenges surrounding rare diseases.

What is the mission of Pharmacy Awareness of Rare Diseases (PARD)?

Rare diseases affect approximately 1 in 12 Canadians, with a significant number impacting children. These conditions often receive limited attention, resources, and research funding due to their rarity (Canadian Organization for Rare Disorders, 2015)¹.

Pharmacy Awareness of Rare Diseases (PARD) is a new student-led initiative focused on raising awareness and education about rare diseases within the Leslie Dan Faculty of Pharmacy. Our mission is to foster discussions on patient challenges and advancements in orphan drug research, as well as to support rare disease organizations through fundraising efforts. We aim to provide pharmacy students with opportunities to broaden their understanding of rare diseases, thereby enhancing interest and awareness in this critical area.

Who are the members of the PARD team, and what roles do they play?

PARD initiative is spearheaded by a group of pharmacy students who are deeply committed to the cause of rare diseases awareness. Our executive team includes:

• Nuzat Karim, President & Co-Founder
• Lea Ghaddar, Vice President & Co-Founder
• Muyiwa Womiloju, Secretary & Treasurer
• Samir Kanji and Maya Crews, Co-Events Directors
• Nursan Abdullah and Ruba Ullah, Co-Marketing Directors
• Pooja Patel (2T4), Leeya Wilson (2T5), Mirella Savo (2T6), and Mohammed Al-Omary (2T7), Class Representatives

Each team member is an integral part of our club, bringing their own skills and passions to the table. We are grateful for their dedication and contributions to ensure that PARD’s work in rare diseases advocacy is meaningful.

What kind of events does PARD organize?

PARD organizes a variety of events aimed at raising awareness and supporting individuals with rare diseases within the field of pharmacy practice. Last semester, we hosted a bake sale fundraiser and raised over $260 for Cystic Fibrosis Canada. We also welcomed guest speaker Matthew Lau, a Medical Science Liaison specializing in the rare disease pulmonary hypertension, to share his experiences and contributions to the field. Additionally, we run monthly social media awareness campaigns, highlighting orphan drugs such as Trikafta for cystic fibrosis, and rare conditions such as salivary gland cancer, Wilson's Disease, and Multiple Sclerosis across all our platforms.

This semester, we are thrilled to organize a second bake sale fundraiser on Rare Disease Day, February 29, 2024, for Hemophilia Ontario. We are further ecstatic to announce a care plan case competition focused on sickle cell anemia pain management, in collaboration with Professor Naomi Steenhof planned for this upcoming March 2024.

How can folks at the faculty get involved with PARD?

PARD extends an open invitation to all faculty and students at the Leslie Dan Faculty of Pharmacy to participate in our events and initiatives!

For updates on what's coming up, make sure to follow our social media pages on Instagram and Facebook, and check our Linktree for quick access to all our channels.

If you have ideas or resources to support our mission, please don't hesitate to email us at pard.uoft@gmail.com. We're always eager to explore potential collaborations!

References
1. Canadian Organization for Rare Disorders. (2015, June 29). Available from: https://www.raredisorders.ca/our-work/