We’d strongly like to make even a road of hope for children.

ENGLISH

Greetings

hppsa-02The HypoPhosPhatasia Support Association of Japan (HPPSA-J) was founded in October 2008 to provide support for the small number of patients and families in Japan confronting this extremely rare disease. The Association originally consisted of only six families bound by their shared desires to see a cure developed as soon as possible.

Dr. Keiichi Ozono with the Osaka University, Department of Pediatrics, has been serving as an advisor for the Association.

Many other medical professionals have also supported the Association (please see Affiliated Physicians).

It is our sincere hope that the patients, families, physicians and researchers can work closely together to promote research into this disease and treatment methods, and ensure that patients will be able to receive any new treatments that become available.

Association Management

Our association was launched on the single-minded belief that we must do more to help children with HPP.

HPP occurs in various forms such as prenatal, infantile, childhood, adult and even odonto and so entails varied challenges.

The stories and backgrounds of the HPPSA-J member families are likewise varied. There are families who have bravely joined the Association to try and make some difference after suffering the unimaginable loss of a child. There are families concerned about the future for their children valiantly struggling with HPP. And there are families with children that have milder forms of HPP, yet as still concerned about how to best cope with the symptoms.

Personally, my son has a relatively mild form of childhood HPP. We have not gone through the true fear, pain and heartbreak experienced by those families comforting children with prenatal and infantile HPP.

It occurred to me that since I was in a relatively fortunate situation, I should volunteer to establish and manage the Association. However, I often worried that I might unwittingly hurt the feelings of those in the association due to a lack of understanding or difference in our experiences and situations.

The thoughts, problems and difficulties of each family vary depending on their child’s age and medical condition. As such, the difficulties in conducting association activities became painfully clear.

However, I believe that everyone has the shared desire to do something to help children struggling with HPP. We also share the same sense of helplessness knowing that presently there are no medications or treatments for HPP. This is why we are determined to face these challenges together.

We want to change the situation so that children coming into this world and their families will never have to know the troubles that we have endured.

The activities of our Association are still small and fledgling. Still, we want to always value the children, remain considerate of others and do everything in our power to put smiles on the faces of children with HPP.

Best regards,

Hiroki Hara
Director
HypoPhosPhatasia Support Association of Japan

LINK

HYPOPHOSPHATASIE EUROPE

hypophosphatasie

Soft Bones
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HYPOPHOSPHATASIE DEUTSCHLAND E.V

 

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