New project launched in Thailand to raise awareness on rare diseases

In a move to raise funds for SMA patients in Thailand, the “Rare&Share” project held a gala dinner on Saturday at St Regis Bangkok.

Graciously attending the event was Her Royal Highness Princess Chulabhorn Krom Phra Srisavangavadhana.

Prof Dr Prasit Watanapa, dean of Siriraj Hospital’s Faculty of Medicine and chair of the Foundation for Muscular Dystrophy, said in a speech that SMA affects one in every 10,000 people.

He said that though this disease is relatively rare in Thailand, with only 200 patients detected so far, SMA is a debilitating condition that has a huge impact on the lives of patients and their families.

“The patient is constantly aware of the disease but has no control over his or her muscles. This results in an inability to move, breathe or even swallow food. Though their intelligence and brain functions are comparable to ordinary people, SMA patients are denied many opportunities in society,” Dr Prasit explained.

The only effective treatment for this disease is gene therapy, which requires the services of specialists. SMA patients also require consistent support, regular rehabilitation and physical therapy.

According to Dr Prasit, SMA patients have two treatment options:

• Palliative care, which includes lifelong medication and gives the patient relative mobility with the use of an electric wheelchair.

• Gene therapy, which can completely cure certain diseases.

However, he said, not many SMA sufferers have access to gene therapy because it is unaffordable for most. Gene therapy for an SMA patient can cost as much as 65 million baht.

In a bid to make treatment more accessible, the Muscular Dystrophy Foundation and the Swiss Embassy in Thailand have come together to support the Rare & Share project. The project was launched by Roche Thailand to raise awareness about rare diseases.

Raising support

Conradin Rasi, chargé d’affaires at the Swiss Embassy, said in Switzerland, a rare disease is defined as a life-threatening or chronically debilitating condition as per the national rare disease policy adopted in 2014. This policy has served as the foundation for regulations related to rare diseases, he said.

The Swiss Embassy has been actively supporting the Rare&Share project to not just raise awareness of the disease, but to also provide medication to SMA patients.

Farid Bidgoli, general manager for Roche Thailand, Myanmar, Cambodia and Laos, said the pharmaceutical giant is focusing on patients suffering from rare diseases because they have to deal with these complex conditions for the rest of their lives.

“This group of patients have trouble with simple tasks like eating or handling cutlery, which makes their lives very difficult,” Farid said.

As part of its campaign, Roche has been making huge investments in research and development of treatment for this class of diseases.

Since SMA patients find it difficult to deal with simple tasks like eating, the Rare&Share project has chosen food as a medium to raise awareness and funds.

David Hartwig, chef of Michelin-starred IGNIV Bangkok restaurant at St Regis, created a special menu for the gala dinner on Saturday.

Hartwig said each dish was created with the fact in mind that SMA patients “need good nutrition in every meal like everybody else, but that even swallowing food is difficult for them”.

This SMA menu will be created again on three days this year – October 9, November 3 and December 4.

Call (02) 207 7777 or email [email protected] to make reservations.

Similar special menus will be created at Bangkok’s Clara and J’aime restaurants next year. All proceeds will go to the Siriraj Foundation Muscular Dystrophy Fund.

Donations can also be made to the Muscle Dystrophy Foundation via Siam Commercial Bank, Big C Saphan Khwai Branch, account number 033-406813-6 or Siriraj Foundation, Siam Commercial Bank, Siriraj branch, current account number 016-3-00049-4. Donations to the first account are not tax deductible, but donations to Siriraj Foundation are.