Tag Archives: medicine

Volunteer for the Hong Kong Alliance for Rare Diseases

23 May

A rare disease is any uncommon disease with a very low prevalence rate. There are over 6,000 diseases identified as rare diseases worldwide. Most rare diseases are caused by genetic defects or mutation and are found during childhood or even early infancy. In most of the cases, they pose serious threat to a patient’s entire life with extreme disabilities affecting quality of life. Some of them are even degenerative and life-threatening.

The definition for rare diseases differs among different organisations and jurisdictions, as follows: 6.5 to 10 cases in every 10,000 by World Health Organization (WHO); less than 7 in every 10,000 in the US; less than 5 in every 10,000 in the European Union (EU); and less than 1 in every 10,000 in Taiwan.

Some commonly known rare diseases identified in Hong Kong include Mucopolysaccharidosis, Pompe Disease, Infantile Cutaneous and Articular Syndrome, Tuberous Sclerosis Complex, Myelofibrosis, Marfan Syndrome, Spinocerebellar Ataxia, Muscular Atrophy, Fabry Disease, Gaucher Disease, Achondroplasia, various forms of Osteochondrodysplasias, Inborn Errors of Metabolism and Mitochondrial Diseases. Most of the rare diseases are genetic in nature. In spite of a very few reported cases, rare diseases present a real threat to patients’ health, and bring heavy burden to their families.

Hong Kong has in place a world-renowned public health policy, and a healthcare system of high standard. However, we lag far behind in terms of prevention, diagnosis, treatment and protection of rare disease patients, as compared with many countries and places in Europe, US, and Asia. Government has not come up with a clear definition of rare diseases, or formulated related policies. The general public, including some healthcare professionals and social workers, have inadequate understanding and knowledge about rare diseases.

What Hong Kong Alliance for Rare Diseases does
* Enhance understanding of rare diseases among patients, carers and their families; promote self-help and mutual support and positive attitude, towards leading a more fulfilling life.
* Promote public education on rare diseases, strengthen community awareness, understanding and support for patients, their families and related self-help organisations.
* Ensure rare disease patients and their families’ needs and views are represented via policy advocacy and dialogues with Government authorities; leading to the formulation of proper support policies and services to address their needs in medical care, rehabilitation, education, welfare and social participation.
* Support and assist in rare disease-related research study.
* Unite rare disease patients, families, self-help organisations, healthcare professionals and academia, media and other stakeholders, promote collaboration and exchange.
* Promote dialogues, consultation and collaboration among related rare disease organisations in Hong Kong, Mainland China and overseas.

What you can do to help
The Hong Kong Alliance for Rare Diseases organises various events and activities to promote community awareness and support for rare disease patients and families. They invite you to act now and register as their volunteer.

Please download and fill in the Volunteer Registration Form by following this link, and email to info@hkard.org

Italian Charity Day at Sandy Bay

14 Nov

iwa_colThe first Annual ‘Italian Charity Day at Sandy Bay’ was held in December 1983. This Fund Raising Event is organized by the Italian Women’s Association to raise funds for The Duchess of Kent Children’s Hospital at Sandy Bay, a paediatric hospital specializing in orthopaedics, neurology and degenerative diseases.

The fair is an annual event which is held on the first Saturday of December. It has two main attractions: ‘II Mercatino’, a bazaar of products donated by Italian sponsors, and ‘Le Grazie’ restaurant serving authentic Italian dishes prepared by the local Italian community. People are welcome to reserve a table at the delicious restaurant or enjoy Italian dishes at the ‘Gourmet Corner’, at a minimal cost and with all proceeds supporting a worthy cause.

Date: Saturday, 5 December 2015

Time: 10am – 5pm

Location: Duchess of Kent Children’s Hospital, Sandy Bay

Sandy Bay Charity Fair at DKCH

1 Nov

Sandy_Bay_Charity_FairSince 1981, the annual Sandy Bay Fair has been held on the first Saturday in November, from 10:00 a.m. to 5:00p.m. Held at the Duchess of Kent Children’s Hospital at Sandy Bay at Pokfulam, the Fair is legendary and well attended by the public. Loads of bargains, lots of fun, laughter and delicious food. All net proceeds are used to support the Hospital to improve medical facilities.

So come and have some fun, and stock up on Christmas cards and gifts for friends and family.

Date: Saturday, 7 November 2015

Time: 10am – 5pm

Location: The Duchess of Kent Children’s Hospital at Sandy Bay
12 Sandy Bay Road, Pokfulam, Hong Kong

Cost: Free

About The Society for Relief of Disabled Children: The Society for Relief of Disabled Children believes every child has the right to live happy and fulfilling lives and they strive for a world in which disadvantaged children can grow fulfilled lives and contribute to society and realize their full potential.

The Society for Relief of Disabled Children is committed to:
– Promoting awareness of equality and freedom from discrimination in the community – Improving the children’s physical health by sponsoring medical, surgical and rehabilitation services
– Caring for their psychological well being and mental mindset and by empowering them with love and care

Musica Senza Confini for MSF

29 Oct

msf posterOpera Prima Society of Hong Kong (香港美樂歌劇社) is a newly established non-profit making organization aiming at presenting and organizing opera, musical, vocal, choral, and instrumental music fundraising events in generating donations in support of humanitarian groups globally.

On 18 November, Opera Prima will launch their very first fundraising event, a concert benefiting Doctors Without Borders (MSF). So come join them for an evening of music and help raise funds for a very good cause.

Date: Wednesday, 18 November 2015

Time: 8pm

Location: Concert Hall, Hong Kong City Hall

Cost: $1,000, $300, $100
Tickets can be purchased at URBTIX

About MSF: Médecins Sans Frontières (MSF) – Hong Kong was established in 1994, and is now one of the 24 associations of the international movement. MSF has offices in Hong Kong, Beijing and Guangzhou, and are extending their work to some of the countries in southeast Asia. Because of the generosity of public support, the funds raised in Hong Kong and the region are an important support to their global relief work. The large majority of the money comes from individuals.

MSF organises a variety of public events and experience sharings, and facilitate media interviews to raise awareness of humanitarian crises.

MSF recruits field workers from Hong Kong and the region for their missions and provide professional training. They also support MSF field missions in the region, as well as responding to emergencies.

The 5th Race with Pink Heels

11 Oct

heelsYou into heels? How about Pink ones? How about running in Pink Heels?

pink heelsRace with Pink Heels is an annual charitable event organized by Hong Kong Hereditary Breast Cancer Family Registry. It aims to promote knowledge and risk awareness of hereditary breast, ovarian and prostate cancers caused by BRCA gene mutation, and also to raise fund for supporting the underserved high-risk families by undergoing BRCA testing and genetic counseling services in the community.

slide_4Participants are required to wear a pair of heels, 2-inch or below, with pink ornaments. The race course is 100 meters long at Stanley Main Street. There are 3 Race categories: Individual Challenge, Quadrathlon Team Race and Fun Race. “The Champion Award” is awarded for each game. For raising public awareness of hereditary breast cancer, all participants are welcome to put on pink accessories as support to the event. “The Best Costume Award” & “Top Fundraiser Award” is available for contending.

Date: Sunday, 22 November 2015

Time: 12 6pm

Location: Stanley Main Street, Hong Kong

For more information about the race, entry requirements and prizes awarded please follow this link to their website

hbcf_logoAbout the Organisers: Established in 2007, Hong Kong Hereditary Breast Cancer Family Registry is the only and first-ever charitable organization dedicated to help the high-risk families who have hereditary risk of breast, ovarian and prostate cancer due to BRCA gene mutations. They also aim to advance and standardize clinical care by formulating preventative measures through data collection, research, public education, counseling and supportive care services in reducing the incidence of hereditary cancers in Chinese population.

The Registry now has the largest database and biobank of hereditary breast cancers specimens in Chinese which would facilitate better understanding research of the disease locally and worldwide. THE REGISTRY has raised funds for financing the underserved high-risk families in the community to undergo genetic testing and counseling and has benefited over 1,000 families up to now.

Step Out for Children charity walk benefiting The Society for the Relief of Disabled Children (SRDC)

23 Aug

Walk_loop_1
The Society for the Relief of Disabled Children (SRDC) will be hosting an educational charity walk to help disabled children. In addition to the walk, there will be information booths to raise awareness on challenges that disabled children encounter, and how SRDC help them to address these challenges. Funds raised will go towards medical services supported by the SRDC.

The walk around Cyberport is a leisurely and scenic route.
Route: Cyberport Road > Sha Wan Drive > Sandy Bay Road > Victoria Road > Cyberport Road > The Arcade, Cyberport
Distance and Duration: About 6.4 km, about 2 – 3 hours with a carnival to follow

Date: 20th September, 2015

Time: Registration 9:00am, Start 10:00am

Location: Ocean View Court, The Arcade, Cyberport

Cost: A minimum donation of $200 is required to participate

Deadline for registration: 11 September 2015

For more information and to register, please follow this link to the SDRC website

About The Society for the Relief of Disabled Children : The Society for the Relief of Disabled Children (SRDC) was established in 1953, with the mission to provide medical, surgical, rehabilitation and educational services to disabled children in Hong Kong. The Society, using funds generated by the generosity of the community, established a convalescent home in Sandy Bay in 1955 for children stricken with skeletal tuberculosis. The home initially had only 50 beds but was subsequently expanded in stages to become the Duchess of Kent Children’s Hospital at Sandy Bay (DKCH) in 1968 and was in the frontline fighting against tuberculosis, poliomyelitis and spinal deformities. The Hospital subsequently became internationally recognized for this work and remains a training center for surgeons and health workers from around the world.

The Society was responsible for the running cost of the Home and Hospital and ran the institutions on a day-to-day basis until 1991 when the Hong Kong Hospital Authority took over management of all public hospitals in Hong Kong. Despite the change in management, the Society still has a significant influence in the running of the Hospital and has continued to support the Hospital with specific needs or in emerging areas of child health that are not readily available in the public health care system. They have also expanded into other areas of medical social concerns that fulfill the mission of the Society.
Society for the relief of disabled children
Currently, the Society is supporting the following programmes:
– equipment purchase or upgrade at The Duchess of Kent Children’s Hospital at Sandy Bay
– the Kids on the Block Puppet Troupe
– Doctor Fellowship Program – Overseas Orthopaedic Surgeons
– China Patient Project
– Implant Sponsorship
– Others, e.g. clinical research at HKU

Nepal earthquake – updated 14 May

26 Apr

Kathmandu Struck By Powerful EarthquakeA 7.8 magnitude quake struck an area of central Nepal between the capital, Kathmandu, and the city of Pokhara on Saturday morning. Although the extent of the damages is still unknown, initial reports say houses and buildings collapsed in Kathmandu and surrounding areas. Tremors were also strongly felt in northern India, in the states of Bihar and Uttar Pradesh.

Nepal-EarthquakeRescue efforts in Nepal are intensifying after more than 1,800 people were killed in the country’s worst earthquake in more than 80 years. Many countries and international charities have offered aid to Nepal to deal with the disaster. Help by making a donation. Some of these charities who are already actively involved in the disaster include:

 

Save the Children

Kathmandu Struck By Powerful Earthquake“As the sheer devastation of the recent earthquake becomes clearer, we know that children have been the most affected by this disaster,” says Roger Hodgson, Deputy Country Director for Save the Children in Nepal. “Despite the difficulties in reaching some of the hardest-hit regions, Save the Children is mobilising much-needed items to help these children and their families. Helping those most affected by this disaster will continue to be our top priority in the coming days, weeks and months.”

To assist those displaced by the quake, the charity has begun the delivery of 136 tarpaulins in Kathmandu, while in the earthquake-affected Bhaktapur district, 180 baby packs – which include children’s clothes, blankets and soap – are being distributed to those in need. Save the Children will also begin distributing many more items to some of the hardest-hit regions outside Kathmandu Valley, including Gorkha and Sindhupalchowk districts.

The charity has launched a fundraising campaign with the goal of raising 50 million USD to assist with its aid efforts. To donate, please follow this link

MSF
A second earthquake today hit Nepal, this time with an epicentre 80km east of Kathmandu, in Dolakha district. Teams from Médecins Sans Frontières (MSF) are conducting assessments in the affected areas, including Dolakha itself. In the Charikot area of Dolakha district they have seen villages destroyed by this second quake.

An additional MSF team is conducting an assessment by car in Bhaktapur, east of Kathmandu, while other MSF medical teams have divided and are visiting various hospitals in Kathmandu ready to intervene immediately if necessary.

This comes as the Nepali population struggles to recover from the loss of life and substantial damage that followed the earthquake of 25th April in which over 8,000 people died.

“This complicates an already precarious situation. There is going to be more trouble accessing the affected areas. MSF is strengthening its emergency operations and re-assessing the needs of those affected by the current earthquake in order to respond accordingly and immediately,” says, Dan Sermand, MSF’s Country Director in Nepal.

For the last two weeks, MSF teams have been providing medical assistance and distributing food and shelter to remote areas impacted by the previous earthquake. MSF has also set-up an inflatable hospital in Arughat in Gorkha district, which is running and serving the population affected by that previous disaster.

To donate to MSF please follow this link.

Red Cross
Hong Kong Red Cross has immediately mobilized HKD 500,000 to provide immediate relief and welcome donations from public to support the revealing humanitarian needs.
Red Cross Actions
Immediately after the shock, Nepal Red Cross Society has been working on the ground for rapid needs assessment and providing immediate relief to those affected, including:
– Search and rescue in the rubbles, first aid services to the wounded
– Red Cross blood bank providing blood supplies to the main medical facilities in Kathmandu
– Setting up tents to shelter affected population
– Emergency tracing services to assist families who lost contact because of the quakes
– International Red Cross mobilized over HKD 4 million to support relief actions, and assessment teams arriving Nepal to coordinate the operation

Hong Kong Red Cross Actions
– Mobilized HKD500,000 for immediate relief
– Emergency tracing service is offered to people in Hong Kong looking for their missing families in Nepal due to this disaster.
If you know someone missing a loved one in Nepal please pass this information to
• Tel: 2507-7135 (during office hours, Monday to Friday 9:00 am to 6:00 pm) and 5511-2382 (non office hours, Monday to Friday 6:00 pm to 10:00 pm, Saturday & Sunday 9:00 am to 10:00 pm )
• Email: tracing@redcross.org.hk
• Website: http://www.redcross.org.hk/en/tracing_service/emergency_tracing_introduction.html

Hong Kong Red Cross also is accepting donation designated to “Nepal Earthquake 2015” operation. Please visit their website for more information.

Oxfam
Oxfam’s team in Nepal is assessing humanitarian need following the devastating earthquake. In addition a team of technical experts are preparing to fly from the UK with supplies to provide clean water, sanitation and emergency food supplies.

Cecilia Keizer, Oxfam country director in Nepal said:
“Communication is currently very difficult. Telephone lines are down and the electricity has been cut off making charging mobile phones difficult. The water is also cut off. The number of people killed is continuing to rise. Many of the old houses have been destroyed and at least one large apartment block has come down in Kathmandu. Given the closeness to the epicentre Pokhara must also be badly affected. Oxfam is preparing to help provide clean water and emergency food. People are gathered in their thousands in open spaces and are scared as there have been several aftershocks.”

To make a donation to help with their immediate work in Nepal, please visit their website.

UNICEF
20150512_NepalEarthquakeUNICEF has teams on the ground in every affected district. Their focus is now on how children may have been impacted by this new earthquake. The quake follows the 25 April earthquake that left more than 8,000 dead, thousands more injured and 1.7 million children in urgent need of humanitarian assistance.

You can imagine what must have happened in those hillsides that were ravaged by the quake the last time, or how this quake will not only damage the buildings that were already cracked, but the impact it will have on the already frightened and vulnerable children and young people. Read an eyewitness account from a UNICEF staff member

UNICEF has been working round the clock to get life-saving aid to children since the first quake hit. And your donations can help them deliver urgent essentials — like safe drinking water, adequate sanitation facilities, tents and medical supplies. With your support, UNICEF can provide vital counseling and child-friendly spaces to help children come to terms with their traumatic experiences.

UNICEF will do everything possible to keep children safe. But with the massive damage, they urgently need your help.

To make a donation to UNICEF to support their Nepal Earthquake Response, please follow this link.

World Vision
World Vision Hong Kong’s Chief Executive Officer Kevin Chiu says, “World Vision has been working in Nepal for over 30 years, and more than 200 local staff are ready to join the relief efforts on the ground. Water and power ran out in affected areas, and communications are disrupted. Millions of people have lost their homes and in dire need of food, water, shelter, warm clothing and hygiene kits. They need our help urgently!”

World Vision Hong Kong has initially contributed HK$1.56 million to provide help to the quake-stricken people. Together with other donations, it will bring help, such as hygiene kits and emergency aids to survivors, and set up Child Friendly Spaces to release the emotional distress of children; which is estimated to help 50,000 people. Their local staff are assessing the impact of the quake and are ready to respond to the needs of the affected. World Vision commits its full effort to help the affected children and families amid emergency to rebuild their homes. To donate to World Vision, please follow this link.

This blog will be updated as and when more information regarding rescue efforts come in.