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September 2018
Archived News

Support for Patients with Orphan Diseases

In September 2011, we have recruited a full-time bilingual social worker, Kimmy Lam, to increase awareness of orphan disease in Hong Kong and provide direct patient and family support.  Kimmy is an experienced social worker who has worked in the rehabilitation field for more than 5 years. 

With the support of a social worker, we can better provide sufficient counseling support services to patients and family members with orphan diseases by referring them to local and international medical experts for various consultations.  Furthermore, we are also building our connection with social network of doctors, donors, related non-governmental organization, foundations and self-help groups.

JUNE 2011
1st Malaysian Conference on Rare Disorders & Medical Genetics

Our chairman Christina Hellmann and director, Julie Andersen participated in the rare disorder conference on June 9-10, 2011 in Petaling Jaya, Malaysia. The conference was composed of prominent local and international speakers whom have contributed to building a caring community towards children with orphan diseases, especially in the usefulness on genetic counseling and parental support. As the representatives of Hong Kong, JHF participated in successfully building a stronger orphan disease social and medical community within Asia Pacific, including Hong Kong, Taiwan, Malaysia and Philippines.


Standard Chartered Marathon
Ioannis Divanis generously and courageously ran the full marathon (42km) to raise money for diagnostic testing. 

The 9th Asia Pacific Conference on Human Genetics
The meeting was a 4 day conference (30 November - 3 December, 2010) held in Hong Kong [http://bmi.ym.edu.tw/wp/?p=3103]. Christina Hellmann represented JHF and gave a presentation on "How to raise and take care of a child with orphan disease."

The 7th Conference of Asian Society for Mitochondrial Research and Medicine and The 10th Conference of Japanese Society for Mitochondrial Research and Medicine [http://www.mit2010.org/]
The meeting was held on December 16-18, 2010 in Fukuoka, Japan and attended by international doctors. Christina Hellmann represented JHF and spoke at the conference on the challenges of raising a child with a mitochondrial disease.

2nd JHF Gala Fundraiser Dinner Event
We raised HKD$1.6 million at a dinner and auction at Gaia Ristorante. Much of the money raised will go toward developing Hong Kong's first diagnostic centre, as well as ongoing support of diagnostic testing, family support and medical education.

RTHK 3 Interview
Christopher Schrader and Christina Hellmann were interviewed on RTHK 3’s Morning Brew show, hosted by Phil Whelan on October 2, to discuss “Walking with a Purpose” and Joshua Hellmann Foundation. 

Walking with a Purpose
Fundraising on behalf of Joshua Hellmann Foundation, two motivated young men, Christopher Schrader and Charles Waite-Roberts raised HK$ 130,000 for charity, via sponsorship donations of their 14 day “Walking with a Purpose” hike -  a 350 miles (560 km) journey from Land’s End, Penzance to Pangbourne College, Reading in the UK.DECEMBER 2008

Clinton Global Initiative (CGI) Commitment to Action

The Foundation became a Member of CGI in December 2008 and has committed to sponsoring diagnostic testing for 26 children. We have disbursed funds for the diagnosis of several children to date and look forward to meeting this important initial target.

Inaugural Fundraising Dinner
We raised HK$1.8 million at a dinner and auction at Gaia Ristorante. A specific pledge was made to fund the diagnosis of 26 children being treated at Queen Mary Hospital. 

Orphan Disease Symposium
We organized a Symposium on Orphan Diseases held at the Hospital Authority where specialists from Hong Kong and abroad gave presentations to medical professionals and the public. The symposium addressed the topics of raising a child with orphan disease; what orphan diseases are and how to manage them; the local situation of Neurometabolic diseases; and orphan drug therapy. 

RTHK 3 Interview
Christina Hellmann and Dr. Cheuk-Wing Fung were interviewed  on RTHK Radio 3’s Morning Brew show, hosted by Phil Whelan on October 13 to discuss the Foundation’s activities.