Manama – Arabian Gulf University (AGU): CARE for RARE is the first rare disorders support group that opened in Bahrain on 11 of April, as continuation of the Rare Disease Campaign 2021.  

The webinar was attended by AGU president Dr Khalid Bin Abdulrahman Al Ohali along with Princess Al Jawhara Center for Molecular Medicine, Genetics and Inherited Disorders director Professor Moez Bakheit and the dean of the CMMS college, Professor Abdelhalim Deifala.  

The CARE for RARE support group leader and the head of the Rare Disorders campaign, Consultant Geneticist Dr Cristina Skrypnyk said that the event seeks to form a local coalition by creating a platform to join international expertise, including health experts as well as patients and their families in order to understand their needs as well as provide the basic mechanism for a comprehensive care system.  

A group of medical experts- geneticists, pediatricians, neurologist, psychiatrists, psychologists- from Arabian Gulf University, Al Jawhara Center, University Medical Center and various hospitals and clinics in Bahrain, together with AJC genetic center staff and AGU senior medical students,  came together voluntarily, to serve more the community and help patients and their families from their professional expertise.   

Dr Cristina Skrypnyk revealed that building a comprehensive care system is critical to provide an opportunity to rehabilitate patients with rare disorders and support them in leading a better-quality life.  “Currently there are no associations for patients suffering from rare diseases or a national registry for them in the kingdom of Bahrain,” she said.  “There is a lack of guidance and continuous support for patients with rare diseases as these different illnesses impact different age groups differently.” “There are also some very rare diseases, and no one knows about them so there is an urgent need to make greater efforts and practical steps to change this reality.” “It is important to help these patients in Bahrain and strive to transfer the expertise and experiences of other countries in this field.” 

Families from Bahrain and the rest of the world who suffer from rare diseases presented their stories during the webinar launching of the support group which also included presentations about the experiences of centers and support networks across the globe.  

Also, as invited quest was the EURORDIS board member, president of the National Alliance for Rare Diseases in Romania, Mrs Dorica Dan, who is also a psychologist, and conveyed the experience of the Romanian alliance over the past 15 years and the efforts done at the European level for rare disorders.   

She noted that the Romanian alliance for rare disorders  began personally through a family looking for answers, services and care for a child with a rare disease and has today turned into a national alliance bringing together hundreds patients and their families in Romania.  

She highlighted that the alliance was able to establish the first rehabilitation center, the only one from Europe initiated by patients not by medical experts,  working to meet the needs of patients while also developing international networks and setting up health registries for patients with rare diseases. The Romanian alliance is member of  EURORDIS, the European organization of rare disorders.   

Meanwhile, the second guest was French resident in Dubai Mrs Lusine Mehrabi who is an international expert in negotiation and a mother of a child with a rare disease.  

She outlined the challenged she faced as a mother and explained how she was able to adapt her thinking to live moment-by-moment without subjecting herself to negative thoughts.  

She also discussed her experience in supporting families of patients with rare diseases by promoting positive thinking and developing the art of negotiation in order to obtain better care for patients instead of being pre-occupied with the difficulties they face.  

The third guest speaker at the Parents Support Meeting was the Sunshine House Health Rehabilitation Happiness Manager Mrs Mahin Al Wazzan who took part in establishing this new state of art rehabilitation center in Bahrain following personal suffering that drove her search for solutions to care for patients with rare diseases.  

Meanwhile, Ms Zainab Ali – also from Bahrain – discussed her experience with a rare disease that began with an incorrect diagnosis followed by identifying the disease and coming to terms with it.  

She then began educating herself about the diseases and work towards correcting misconceptions, followed by challenging the disease, acceptance and moving forward with her life, and graduating with a degree in interior design from University of Bahrain.   

She also broke through the barriers imposed by her disease through developing her hobby and love for drawing.  

“Caring for a child with a rare disease needs a high degree of acceptance and transparency,” said Bahraini Mr Talal Kanafani.  He presented the journey his family took to understand the sufferings their child had, the long time required to get the correct diagnosis and the important of acceptance, looking for solutions and having a close contact with the experts who know better the disease. 

“Parents must intensify their energy by all means to ensure their children’s cases are identified and work to provide them with the necessary care and comfort.”  

Also taking part in the meeting was Italian-based Association of the Pallister-Killian Syndrome founder director Mrs.  Samantha Carletti who presented their efforts in caring for patients with a very rare disease and building from scratch a new association in Italy and expended at the international level. She gave hope to entire audience by presenting her journey and courage to write a different story for her child, together with medical experts and other families with affected children. She underlined the importance of medical research in rare disorders and the impact the results can have in day by day life of an affected person.  A Bahraini family with a child with the same very rare disease was helped by the association and found a better care and support.  

The meeting concluded with a presentation of the medical students, members of the rare disorders awareness team in Bahrain, which was delivered by AGU Faculty of Medicine sixth year students Ms. Sarah Al Oraibi and Mr Hassan Al Mosawi. The medical students presented how being part of the team taught them to offer care and support, to be courageous, to understand better the suffering patients with rare disorders and their families face and underlined how this experience shaped their personalities and determined them to prepare for excellency and to serve their community.

Closing the meeting, the leader of the CARE for RARE support group, Dr Cristina Skrypnyk, thanked all participants and the colleagues from the support group, for their willingness to contribute as volunteers in making a change for better care and support and empower the Bahraini rare disorders patients and their families. The support group will have regular meetings over the year and is planning to develop various activities.  

Send us your press releases to pressrelease.zawya@refinitiv.com

© Press Release 2021

Disclaimer: The contents of this press release was provided from an external third party provider. This website is not responsible for, and does not control, such external content. This content is provided on an “as is” and “as available” basis and has not been edited in any way. Neither this website nor our affiliates guarantee the accuracy of or endorse the views or opinions expressed in this press release.

The press release is provided for informational purposes only. The content does not provide tax, legal or investment advice or opinion regarding the suitability, value or profitability of any particular security, portfolio or investment strategy. Neither this website nor our affiliates shall be liable for any errors or inaccuracies in the content, or for any actions taken by you in reliance thereon. You expressly agree that your use of the information within this article is at your sole risk.

To the fullest extent permitted by applicable law, this website, its parent company, its subsidiaries, its affiliates and the respective shareholders, directors, officers, employees, agents, advertisers, content providers and licensors will not be liable (jointly or severally) to you for any direct, indirect, consequential, special, incidental, punitive or exemplary damages, including without limitation, lost profits, lost savings and lost revenues, whether in negligence, tort, contract or any other theory of liability, even if the parties have been advised of the possibility or could have foreseen any such damages.