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The RMs are the eyes and ears of the IGA and are responsible for working closely with key stakeholders in the Gaucher community such as patients, patient associations, doctors, industry, and policymakers; exploring and identifying new development opportunities; and identifying and addressing challenges faced by Gaucher patients in the region.

 

The Regional Managers project was started as a 12-month pilot project in 2018, and it covered four regions across the world: South Asia, Eastern Europe and the Balkans, Central America, and the Caucasus and Central Asia. The RMs' have been working on improving awareness of Gaucher disease in their regions, and have conducted CMEs for healthcare professionals in countries such as Nepal (2019) and a virtual CME on LSDs in South Asia (2021). The RM's report to the Board and CEO. 

 

In 2021 the RM programme was revised and now in 2022 we have 6 regions and 8 regional managers. The RM Programme is led by the IGA Projects officer, Vesna Aleksovska, who you can contact for more information. 


Meet the team

 

Adel Kaplan (Russia) was diagnosed with Type I Gaucher when she was 7 years old, after difficult examinations and misdiagnosis.  At that time, a system of care for patients with orphan diseases had just appeared in Russia and the search for treatment began.  During this time, Adel's mother met many other patients, and found the patient organization and her work in the patient organization began.  With the coming of adulthood, Adel took her mother's place in the organization which has in recent years achieved the inclusion of Gaucher disease in the federal program for the provision of treatment, conducted many patient schools, forums, and congresses.  She graduated from university in 2018 and is working as a primary school teacher.

 

Area of responsibility: European region 1 (Armenia, Azerbaijan, Belarus, Georgia, Hungary, Kyrgyzstan, Tajikistan, Turkmenistan, Uzbekistan)

 

Anne - Grethe Lauridsen (Denmark) is the chairperson for the Gaucher Association Denmark and former IGA board member. She is also a Gaucher patient and is now struggling with metastatic breast cancer. Anne-Grethe is working alongside Ayran Rowe to map a number of European Countries where the IGA for the time being do not have a member organization.

 

Area of responsibility: European region 2 (Cyprus, Iceland, Kosovo, Liechtenstein, Malta, Monaco, Montenegro)

 

 


Ayran Rowe (United Kingdom) - Being neurodivergent I understand the agenda around “hidden disabilities.” I’m passionate about mental health, the underrepresented demographics of youth leadership, barriers to inclusion of individuals with disabilities and changing the narrative inclusively. I sit on a Board of Trustees; for an organisation which provides support services to individuals and voluntary organisations. Alongside this I support adults with complex needs and I’m currently studying a Level 4 in Mental Health and Psychiatry. I was inspired to help from a close friend living with Gaucher Disease Type 3, Sara Khan. Anne-Grethe Laurisden and Vesna Aleksovska, raw passion and always inspiring. Entrepreneurial, humility, tenacity and passion are all I strive to be and more.

 

Area of responsibility: European region 2 (Cyprus, Iceland, Kosovo, Liechtenstein, Malta, Monaco, Montenegro)

 

 

 

 

 

 

Mugdha Bhagwat (India) is a Type 1 Gaucher's disease patient from Mumbai, India. She started volunteering with the IGA in 2021, as a patient consulting on home therapy research and analysis, and currently as the Regional Manager for the South Asia region (Including the following countries: Bangladesh, Bhutan, Indonesia, Myanmar, Maldives, Nepal, N. Korea, Sri Lanka, Timor-Leste). After being diagnosed with Gaucheromas a rare complication of the disease, she sought to contribute to raising awareness about the disease, create a curated set of resources and community to help new and existing patients. She is a computer engineering graduate, currently working as a technology associate, and is passionate about traveling, painting.

Area of responsibility: South East Asia region (Bangladesh, Bhutan, Indonesia, Myanmar, Maldives, Nepal, N. Korea, Sri Lanka, Timor-Leste)

 

 

 

Patricia Lucki (Guatemala) was born in Argentina and has lived in different countries, including Israel and El Salvador and currently lives in Guatemala.  She was diagnosed with Gaucher Type I when she was 55 years old. Patricia has a degree in Sciences of Information and an AM in Communications; she is PhD candidate in Sustainable Development    and works as a consultant for public and private institutions. She also teaches at a local university.

 

Area of responsibility: Central America 1 region (Honduras, El Salvador, Nicaragua, Costa Rica, Panama, Belize, Dominican Republic)

 

 

Atif Qureshi (Pakistan) is the founding member and president of Lysosomal Storage Disorders Society, a nonprofit organization working to raise awareness for rare disorders. The organization also provides genetic counseling to affected families and campaigns for early diagnosis and effective therapies in Pakistan. Atif got involved in the rare disease space and determines to advocate after both his daughters were diagnosed with Gaucher disease. He is currently working on multiple projects with pharmaceutical and genetic companies and global patient groups.

 

Area of responsibility: Eastern Mediterranean region (Afghanistan, Bahrain, Iran, Iraq, Kuwait, Lebanon, Oman, Qatar, Saudi Arabia, Syria, United Arab Emirates, Yemen)

 

Africa Region

 

Trudy Nyakambangwe (Zimbabwe) is a hemophilia carrier and a mother of two young people. She lost her son to hemophilia when he was two years due to a poorly managed internal bleed. Her daughter is also a hemophilia carrier, and that revelation has led to a renewed participation in the rare disease community. In the last five years she has become the founder of an organization called Child and Youth Care Zimbabwe that provides support for children living with rare diseases. As a patient advocate, she now understands legislation, techniques and tools that can be used to champion the interest of children living with rare medical conditions. She is now the co-founder of Center for Rare Diseases Zimbabwe and a lead in the initial stages of a national registry. Trudy is on the panel of experts for Rare Disease International campaign for universal health for all. Lastly but not least Regional Manager in South Africa Region for International Gaucher Alliance.

 

 

Roselyn Odero (Kenya) decided to volunteer for the position of IGA Africa Regional Manager because she felt that Gaucher is under reported in Africa and being one of the few rare diseases with some treatment options, awareness would help both clinicians and patients' families obtain an early diagnosis which would hopefully lead to early interventions. She was also interested in working with an international rare disease organization to learn new skills in the field. 

 

Iman Tagelsir Mohamed (Sudan) as medical advisor

 

Area of responsibility: African region (Zimbabwe, Rwanda, Tanzania, Namibia, Lesotho, Kenya, Ghana, Ivory Coast)