In a key breakthrough, the MENA Organization for Rare Diseases and the International Huntington Association signed a memorandum of understanding during the MENA Organization for Rare Diseases annual meeting 2023, March 3-5, Dubai.
“The International Huntington Association looks forward to the partnership with MENA Organization for Rare Diseases that will have positive ripple effects for all those affected by Huntington in the region”, says President of the International Huntington’s Association Svein Olaf Olsen.
Under the collaboration agreement, two organisations will be established to look after Huntington’s disease – the MENA Huntington Disease Association for patient and families – and an organisation to develop professional expertise related to Huntington’s disease. The professional organisation will be named MENA Huntington Disease Network and will be led by Professor Pierre Kryskowiak at the Yas Clinic in Abu Dhabi.
“We know the presence of Huntington disease is high in the Middle East and North Africa (MENA) region. In 2019 Clineart presented on behalf of MENA a report concluding that Egypt probably has the world’s largest prevalence of Huntington disease with 21 per 100,000. We don’t know exact figures for other countries in the MENA region”, says the president of the MENA Organization for Rare Diseases, Professor Ayman El-Hattab.
“If we find the same numbers as in Europe in the rest of the MENA region, there are 40,000 who carry the gene or are sick as a result of inheriting the disorder that is inherited by 50% from the mother or father”, Professor Pierre Kryskowiak explains and continues:
“There are several reports saying that there are many who are misdiagnosed and hiding with help from the family. This is a very difficult situation for all affected – the patient, family, and friends. You realise something is wrong, but you don’t talk about Huntington”.
“This is not unique to the MENA region, but is a global problem”, says Svein Olaf Olsen, President of the International Huntington Association.
“It was not difficult to reach an agreement with the the International Huntington Association on a collaboration,” says Prof Ayman El-Hattab. “Our organization will work for people with rare diseases and their families as they face many difficulties because of the scarceness of knowledge about these conditions and limited support available for them. The goals of MENA Organization for Rare Diseases are to educate, connect, and support”.
Olsen adds a final note on the broader potential. “In the longer term, we will build up a Centre of Excellence in the region, together with others patient organisations”.
Svein Olaf Olsen – firstname.lastname@example.org – phone +47 91159495
Ayman El-Hattab – email@example.com – phone +971508875123
Pierre Kryskowiak – firstname.lastname@example.org – phone +97115052118685