Rare Leader: Atif Qureshi, President, Lysosomal Storage Disorder Society
June 21, 2018
Name: Atif Qureshi
Organization: Lysosomal Storage Disorder Society
Disease focus: Lysosomal storage disorders are a group of rare, inherited metabolic diseases caused by genetic mutations that result in an enzyme deficiency needed to properly breakdown metabolic waste. These waste fragments build up in various cells within the body and over time cause progressive damage to organs and tissues. There are about 50 different lysosomal storage disorders.
Headquarters: Lahore, Pakistan
How did you become involved in rare disease: My daughter was diagnosed with Gaucher disease in 2010. Surprisingly, no doctor had any idea about the diagnosis. The journey to get her diagnosed was quite difficult and it was an uphill climb to get her treatment. I started helping affected families by sharing my story, connecting families together, and helping the ones who cannot communicate, or lack knowledge of the channels they can access the treatment. Pakistan is unfortunately among the countries where health and education are among the most neglected sectors.
Previous career: I currently work as a service quality manager in banking
Education: Bachelor’s degree in economics and journalism from Punjab University, MBA specializing in marketing from the Institute of Management Sciences.
Organization’s mandate: We propagate for the implementation of rare disease policies that allow all diagnosed patients can get access to approved treatments. There have been treatments for rare disorders, like Gaucher, for almost 30 years. Unfortunately, here in Pakistan, my daughter was only the eighth patient to get it. We don’t have a system in which the government can fund the treatment, so it is very challenging.
Organization’s strategy: We are developing a well-structured and purpose-oriented organization. We are looking forward to collaborations with all stakeholders in the rare disease community. LSD Society is a non-profit support group dedicated to providing information and support to families in the Pakistan whose lives have been affected by lysosomal storage disorders. LSD Society provides information to the general public and medical professionals about life limiting lysosomal storage diseases, and actively encourages ongoing medical research.
Funding strategy: We just got registered. It’s early days for us. We are trying to figure out the best strategies. We are currently focusing on collaborations with local and international organizations that share the same objective. In the future we will be looking at different possibilities for organizing events and rising funds.
What’s changing at your organization in the next year: We are planning more chapters in other parts of Pakistan so that we can have more access to patients and physicians.
Management philosophy: We have a clear mission. Our mission should always be in our sight and we should be driven by our mission. That is how we stay focused.
Guiding principles for running an effective organization: We focus on having strong communication internally and externally. We give a lot of importance to the voice of patient because patients are the main stakeholders and their voice should be heard.
Best way to keep your organization relevant: We need to do more collaboration and partnerships with the rare disease community. We need to understand the community better. Disease can be rare, but hope shouldn’t be. We should be educating people both about disease and advocacy.
Why people like working for you: We share the same vision of finding cures for metabolic disorders. I’m approachable and flexible. I empower people to be a part of the organization and of our cause.
Mentor: Tanya Collin-Histed, the chairperson of the European Gaucher Alliance. She’s been an inspirational patient advocate for me and she’s an amazing human being. She helped securing treatments for most of our patients.
On the Job
What inspires you: People who never lose hope.
What makes you hopeful: There’s a greater recognition of rare diseases now. What makes me hopeful for the future is these organizations are going global. That is going to help us a lot.
Best organization decision: I think the best decision we made so far are the collaborations with international organizations. That’s helped us learn best practices and is helping us with support, which is required.
Hardest lesson learned: Eliminating the emotions out of rare disease is the toughest part.
Toughest organization decision: We are in the process of collaborating with some local organizations and we’re a little confused about it. They do have potential funding, but their goals do not seem aligned with ours. We haven’t decided yet, but it’s going to be a tough decision.
Biggest missed opportunity: If we have had registered ourselves earlier, we would have been a lot more structured and we would have achieved a lot more by now.
Like best about the job: When you are making a difference in someone’s life, that’s the most satisfying feeling. The interaction with influential and amazing people is also a plus of the job.
Like least about the job: It becomes very tough at times to tell the families and patients they won’t be able to get treatments because of the limitations of the funding and collaborations. Most of the compassionate programs are capped and there is hardly any room for new patients. Communicating this to the families is very difficult.
Pet peeve: I don’t like people not fulfilling their commitments.
First choice for a new career: I am a banker, but I would love to start my own restaurant. It’s a family thing.
Most influential book: The 7 Habits of Highly Effective People: Powerful Lessons in Personal Change by Stephen R. Covey
Favorite movie: Troy and the 300
Favorite music: Local Pakistani underground rock music.
Favorite food: Grilled lamb chops
Guilty pleasure: Listening to my favorite music and going to movies
Favorite way to spend free time: Hanging out with friends
June 21, 2018
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