2008 Patient Support Meeting

The conference fee of £50 or $100 per adult (children under 18 are free) will include three nights at the hotel, plus Tuesday dinner, breakfast, lunch and dinner on Wednesday and Thursday and all conference sessions and events.

Each family will need to (a) register with the PC Patient Support Meeting and a form will be available on-line shortly and (b) register with the Atholl Palace Hotel and a conference number and id will be posted shortly.

Once again scholarship funds to assist in travel costs for families attending the PC Patient Support meeting are available from the Philip Mazzo MEMORIAL scholarship fund.

All applications must be received by April 1, 2008 and recipients will be notified in June 2008. To apply for funds, please submit an essay of 200 words or less on “My Life With PC: Why I Want To Attend the PC Patient Support Meeting.” PC Project will retain the essays and may use these in future publications or publicity. Philip Mazzo`s granddaughter has PC and this fund was set up by their family following his death in 2006 and includes donations from many individuals. We are glad to make these funds available to assist those attending the meeting.

We will list here links to organizations and sites which may be of importance to PC Project, PC patients and physicians, scientists and researchers interested in PC and related disorders. Check these websites for a list of activities and events for each organization.

New Feb 2006 – PC Patients in France have formed a support group for PC called Le Coeur au Pied. This is such a wonderful achievement and we hope they will have a lot of success.

The American Skin Association, founded in 1987, is a “volunteer-led health organization dedicated-through research, education and advocacy-to saving lives and alleviating human suffering caused by the full spectrum of skin disorders.”

Dystrophic Epidermolysis Bullosa Research Association is a voluntary, non-profit organization dedicated to finding a cure for Epidermolysis Bullosa (EB) and related disorders.

Debra-internation.org (covers issues of general interest)

Debra.org.uk (Debra in the UK is a highly active and effective charity)

Debra.org (Debra in the U.S.)

The Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T.) was founded January 2nd, 1981 as the National Ichthyosis Foundation and changed in 1989 to include other related disorders.

Genetic Alliance is a “coalition of hundreds of genetic advocacy organizations, health professionals, clinics, hospitals and companies.” The organization seeks to empower individuals and advocacy organizations to help better the lives of individuals and families living with genetic conditions.

HS-USA became a 501(c)3 charity in May 2003 and was founded for the promotion and facilitation of research into the causes, treatments and cure of Hidradenitis Suppurativa. [Some persons with PC also have HS.]

National Foundation for Ectodermal Dysplasias is a non-profit organization founded in 1981 to provide service to those with ectodermal dysplasia (ED) syndromes which include a group of about 150 heritable disorders that affect the ectoderm, the outer layer of tissue in a developing baby. The ectoderm contributes to the formation of many parts of the body, including the skin, sweat glands, hair, teeth, and nails. PC is listed as one of the 150 ED syndromes.

National Organization for Rare Disorders was established in 1983 and is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them

Further information:

[email protected]