1. The Progeria Project Foundation - "It's About Time" - This Web Site Is For All T progeria A very rare terminal condition. From the Greek meaning prematurelyold . The progeria Project Foundation It s About Time . http://www.progeriaproject.com/

Your browser does not support script The Progeria Project Foundation "It's About Time" Progeria: A very rare terminal condition. From the Greek meaning "prematurely old". Characterized by an appearance of accelerated aging. This Web Site is for all those who are directly or indirectly affected by the condition. We hope to provide pertinent information, solutions, and a contact base, amongst other things, for each of you to call upon as your need arises. You will also find pages here devoted to the children who have Progeria. Pages with their specific circumstances and solutions that may help others with Progeria and their families deal with their everyday lives with a more personal touch. Some sensitive areas are protected with passwords. Please contact us if you feel you have reason to access these areas.

2. NORD - National Organization For Rare Disorders, Inc. General Discussion. progeria, or HutchinsonGilford progeria syndrome, is a rare fatal, genetic condition of Children with progeria usually have a normal appearance in early infancy http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Progeria, Hut

3. The Progeria Research Foundation Homepage progeria Research Foundation conducts the support of Medical Research,Promotion of Education and Awarness, and Fundraising. http://www.progeriaresearch.org/

The family of Megan Nighbor, a 3-year-old child with Progeria, held a fun-filled Bowl-a-Thon benefit attended by hundreds on May 8, 2004 at Prairie Lanes in Markesan, Wisconsin. The all-day, all-night fundraiser featured a silent and live auction, bake sale, sponsored bowling, raffles, and much, much more! Organized by Megan's Aunt Sue Giese, hundreds of friends, family and others who heard of Megan's fight for a cure came together in a tremendous show of support for the Nighbor family and PRF's efforts. Megan with her parents Sandy and Steve, and local radio hosts Connie and Fish Click here for more pictures In the May 10th issue of TIME magazine (Connections Bonus Section) PRF co-founder and Medical Director Dr. Leslie Gordon is highlighted for her efforts towards finding the cause, treatment and cure of Hutchinson-Gilford Progeria Syndrome. The article also presents the moving stories of two other parents whose lives were also transformed when their children were diagnosed with serious genetic diseases. To read the entire article, click on this link:

4. Progeria / The Family Village Who to Contact. Where to Go to Chat with Others. Learn More About It. Web Sites. Search Google for "progeria" Who to Contact. Sunshine Foundation Dream Village (Main Office) 5400 C.R. 547 North. P.O . http://www.familyvillage.wisc.edu/lib_prog.htm

Progeria Also known as Hutchinson-Gilford Progeria Syndrome Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search Google for "Progeria" Who to Contact Sunshine Foundation Dream Village (Main Office) 5400 C.R. 547 North P.O. Box 255 Loughman, FL 33858 E-mail: florida@sunshinefoundation.org Website: http://www.sunshinefoundation.org/progeria.htm Since 1976 The Sunshine Foundation® has fulfilled over 23,500 dreams and wishes for chronically ill, terminally ill, and abused children. Whether it's a visit with a celebrity hero, a family outing, a trip to Disney World® or a special gift Sunshine has never said "no" to a deserving child. The majority of wishes Sunshine fulfils are to visit Central Florida attractions. Therefore in February of 1990 Sunshine opened the doors of its' Dream Village and since then approximately 1000 special children and their families have enjoyed the facilities at this special place for special children. In a fairytale like setting with a gingerbread facade, the Sunshine Foundation Dream Village is a place where children and their families stay while they briefly forget the pain and suffering that is part of their everyday lives. In addition, each year Sunshine sponsors a worldwide reunion of children suffering from Progeria. The Progeria Reunion gives those children suffering from this rare disease the opportunity to meet and get to know others with this rare genetic disease. International Progeria Registry W.T. Brown, MD, Ph.D.

5. Progeria Syndrome progeria syndrome information, national and international support groups, clinics with genetic counselors, geneticists Werner Syndrome, Cockayne Syndrome, RothmundThomson Syndrome) progeria Research Foundation. P.O Fax 978.535.5849. E-mail progeria@netzero.net. Web site www.progeriaresearch http://www.kumc.edu/gec/support/progeria.html

Progeria syndromes (Hutchinson-Gilford Syndrome, Werner Syndrome, Cockayne Syndrome, Rothmund-Thomson Syndrome) Progeria Research Foundation P.O. Box 3453 Peabody, MA 01961-3453 Phone: 978.535.2594 Fax: 978.535.5849 E-mail: progeria@netzero.net Web site: www.progeriaresearch.org/ Friends of Progeria Foundation , Huron, SD The Sunshine Foundation (for children with terminal, chronic illnesses such as progeria, dedicated to making the dreams of these children possible) 1041 Mill Creek Drive Feasterville, PA 19053 Phone: 1.800.767.1976 or 215.396.4770 Fax: 215.396.4774 E-mail: philly@sunshinefoundation.org Web site: www.sunshinefoundation.org/ Sunshine Foundation, Dream Village PO Box 255, 5400 C.R. 547 North Loughman, FL 33858 Phone: 800.457.1976 or 863.424.4188 Fax: 863.424.4360 E-mail: florida@sunshinefoundation.org Web site: www.sunshinefoundation.org/dream_village.htm Sunshine Foundation, Volunteer Chapters California, Colorado, Delaware, District of Columbia, Georgia, New Jersey, Pennsylvania, West Virginia Black Hills (PO Box 5009, Rapid City, SD 57709-5009, Phone: 605.393.0426, Fax: 605.393.1369, Fax On Demand: 605.393.0426, option 10)

6. Progeria - Welkom Op De Website Van Michiel - Last Updated: 28.05.2004 Persoonlijke site van ouders met een kind dat lijd aan progeria. Informatie over deze aandoening, foto album en relevante links. http://www.progeria.centerall.com/

Progeria - Welkom op de website van Michiel - Last updated: 28.05.2004 Home Contact Michiel Progeria ... Gastenboek Michiel : de grootste liefde van ons leven Door Godelieve Wielemans en Wim Vandeweert, de zeer trotse ouders van Michiel. (Wonende in België - Belgium) Toen Wim en ik trouwden, wilden wij net zoals zovelen trouwen, huisje bouwen en een gezinnetje stichten.  Op een gegeven moment vonden wij de tijd rijp om aan het gezinnetje te beginnen.  Een eerste keer in verwachting: joepie!  Echter helaas; deze liep in een miskraam uit.  Enige maanden later opnieuw: joepie!  Wij kregen een kindje!  Opnieuw de teleurstelling en het verdriet toen het wederom misging.  Heel veel traantjes gelaten.  Ja, derde keer goede keer dachten wij!  Extra voorzichtig.  Goede zwangerschap achter de rug, niet te veel ziek geweest en na een paar maanden héél blij want de vrucht zat er nog.  Het was niet misgegaan deze keer. Iedere dag een beetje blijer en jawel hoor: op 13 juni 1998 ziet Michiel het eerste levenslicht in het ziekenhuis te Hasselt tijdens de voetbalmatch België – Nederland.  Regelmatig moest de verpleegster van de dokter en van Wim gaan horen wie er voor stond en wie ging winnen.  Heel spannend allemaal terwijl het mij op dat moment geen bal scheelde want ik stond op het punt om voor het eerst “mama” te worden.  Na een gewone, rustige bevalling was hij daar.  Toen ik hem voor het eerst in mijn armen had, kreeg ik zo een zalig gevoel over mij.  Ik lag op een wolk te drijven; zo héérlijk voelde ik mij met mijn jongen in mijn armen.

7. Progeria (Hutchinson-Gilford) Syndrome a CHORUS notecard document about progeria (HutchinsonGilford) syndrome http://chorus.rad.mcw.edu/doc/00334.html

CHORUS Collaborative Hypertext of Radiology Multisystem entities Feedback Search progeria (Hutchinson-Gilford) syndrome premature aging in children normal at birth "wizened old man": alopecia, atrophy of muscles and skin atherosclerosis ==> coronary artery disease dwarfism abnormal facies: receding chin, beaked nose, exophthalmos Findings: acro-osteolysis hypoplastic facial bones + sinuses open cranial sutures + fontanelles, Wormian bones coxa valga Charles E. Kahn, Jr., MD - 2 February 1995 Last updated 26 May 2004 Medical College of Wisconsin

8. Progeria Informatie over deze aandoening van Antwerpse verpleegkundigen. http://members.lycos.nl/progeria/

9. Index „gnar sig ¥t fastighetsf¶rmedling och fortbildning. http://www.progeria.se/

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10. Niederländische Version Stichting voor kinderen met progeria, met informatie over deze aandoening en contact informatie. http://www.progeriafamilycircle.de/holl/

window.open('http://ptbanner.gmx.de/werbungpt1.php3?domain=progeriafamilycircle.de','ptxkEx5h1dQE','width=488,height=50'); STICHTING VOOR KINDEREN MET PROGERIA Wij hopen een steentje bij te dragen aan het levensgeluk en de levenskwaliteit van kinderen met Progeria Op deze site vindt u veel informatie over de ziekte PROGERIA, een aandoening die bij kinderen verschijnselen van vroegtijdige veroudering veroorzaakt. Progeria is ook wel bekend onder de namen HUTCHINSON-GILFORD of PROGERIA INFANTILITIS. Naast klinische beschrijvingen, diagnostiek, symptomen, mogelijke oorzaken en therapieën vindt u ook persoonlijke verhalen in de vorm van biografieën van Progeriakinderen uit de hele wereld. Mocht u na lezing van de documentatie op deze website nog vragen hebben , of heeft u aanvullende informatie voor ons, dan kunt u zich richten tot : progeriafamilycircle@hetnet.nl . U kunt ons via dit adres schrijven in het Nederlands, Engels, Frans en Spaans. De Progeria Family Circle staat als Stichting voor kinderen met Progeria sinds 1997 in Nederland ingeschreven in het stichtingenregister van de Kamer van Koophandel Utrecht onder (doorkies)nr.S266015. Met een spontane financiële bijdrage zijn wij natuurlijk ook erg blij. Uw gift is fiscaal aftrekbaar, en u kunt er zeker van zijn dat ze volledig en direct ten goede komt aan de kinderen met Progeria in Europa.

11. Index Overview of the rare disorder, symptoms, and experiences of children with progeria and their families. http://www.progeriafamilycircle.de/

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12. Telefacts -- The Site Telefacts reportage van de Vlaamse Televisie Maatschappij gewijd aan de aandoening progeria, inclusief dossier. http://www.vtm.be/telefacts/details.htm?id=20121

13. Hutchinson-Gilford Progeria Syndrome Network Provides an overview of the disease as well as links to resources. http://www.laze.net/progeria/index.html

@import "/hgps.css"; Introduction Hutchinson-Gilford Progeria Syndrome is an extremely rare genetic disease that accelerates the aging process to about seven times the normal rate. Because of this accelerated aging, a child of ten years will have similar respiratory, cardiovascular, and arthritic conditions that a 70-year-old would have. Progeria affects between 1 in 4 million (estimated actual) and 1 in 8 million (reported) children, with a total reported incidence of just over 100 in the century since it's been identified. There are currently between 30 and 40 known cases worldwide of Progeria. Children from all races and cultures around the world have been affected. Physical features of Progeria children include dwarfism, wrinkled/aged-looking skin, baldness, and a pinched nose. Mental growth is equivalent to other children of the same age. Most children with Progeria don't live beyond their early teenage years, though one or two have lived to their early 20s. ... more about Progeria and this site Latest News and Updates Fri, 19 Mar 2004

14. The Progeria Research Foundation Homepage progeria Research Foundation conducts the support of Medical Research, Promotionof Education and Awarness, and Fundraising. What is progeria? http://www.progeriaresearch.org/what_is_progeria.shtml

Get free updates with articles for parents, personal stories, news and more! What is Progeria? Hutchinson-Gilford Progeria Syndrome ("Progeria", or "HGPS") is a rare, fatal genetic condition characterized by an appearance of accelerated aging in children. Its name is derived from the Greek and means "prematurely old." While there are different forms of Progeria*, the classic type is Hutchinson-Gilford Progeria Syndrome, which was named after the doctors who first described it in England; in 1886 by Dr. Jonathan Hutchinson and in 1897 by Dr. Hastings Gilford. HGPS is caused by a mutation in the gene called LMNA (pronounced, lamin - a). The LMNA gene produces the Lamin A protein, which is the structural scaffolding that holds the nucleus of a cell together. Researchers now believe that the defective Lamin A protein makes the nucleus unstable. That cellular instability appears to lead to the process of premature aging in Progeria. Although they are born looking healthy, children with Progeria begin to display many characteristics of accelerated aging at around 18-24 months of age. Progeria signs include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, generalized atherosclerosis, cardiovascular (heart) disease and stroke. The children have a remarkably similar appearance, despite differing ethnic background. Children with Progeria die of atherosclerosis (heart disease) at an average age of thirteen years (with a range of about 8 - 21 years).

15. The Progeria Research Foundation Homepage Medical research, education, support, and fundraising for this premature aging disease. http://progeriaresearch.org

The family of Megan Nighbor, a 3-year-old child with Progeria, held a fun-filled Bowl-a-Thon benefit attended by hundreds on May 8, 2004 at Prairie Lanes in Markesan, Wisconsin. The all-day, all-night fundraiser featured a silent and live auction, bake sale, sponsored bowling, raffles, and much, much more! Organized by Megan's Aunt Sue Giese, hundreds of friends, family and others who heard of Megan's fight for a cure came together in a tremendous show of support for the Nighbor family and PRF's efforts. Megan with her parents Sandy and Steve, and local radio hosts Connie and Fish Click here for more pictures In the May 10th issue of TIME magazine (Connections Bonus Section) PRF co-founder and Medical Director Dr. Leslie Gordon is highlighted for her efforts towards finding the cause, treatment and cure of Hutchinson-Gilford Progeria Syndrome. The article also presents the moving stories of two other parents whose lives were also transformed when their children were diagnosed with serious genetic diseases. To read the entire article, click on this link:

16. Hutchinson-Gilford Progeria Syndrome Network HutchinsonGilford progeria Syndrome is an extremely rare genetic disease that accelerates the aging process to progeria affects between 1 in 4 million (estimated actual) and 1 in http://www.laze.net/progeria

@import "/hgps.css"; Introduction Hutchinson-Gilford Progeria Syndrome is an extremely rare genetic disease that accelerates the aging process to about seven times the normal rate. Because of this accelerated aging, a child of ten years will have similar respiratory, cardiovascular, and arthritic conditions that a 70-year-old would have. Progeria affects between 1 in 4 million (estimated actual) and 1 in 8 million (reported) children, with a total reported incidence of just over 100 in the century since it's been identified. There are currently between 30 and 40 known cases worldwide of Progeria. Children from all races and cultures around the world have been affected. Physical features of Progeria children include dwarfism, wrinkled/aged-looking skin, baldness, and a pinched nose. Mental growth is equivalent to other children of the same age. Most children with Progeria don't live beyond their early teenage years, though one or two have lived to their early 20s. ... more about Progeria and this site Latest News and Updates Fri, 19 Mar 2004

17. Hutchinson-Gilford Progeria Syndrome Network Introduction. HutchinsonGilford progeria Syndrome is an extremely rare genetic diseasethat accelerates the aging process to about seven times the normal rate. http://www.hgps.net/

@import "/hgps.css"; Introduction Hutchinson-Gilford Progeria Syndrome is an extremely rare genetic disease that accelerates the aging process to about seven times the normal rate. Because of this accelerated aging, a child of ten years will have similar respiratory, cardiovascular, and arthritic conditions that a 70-year-old would have. Progeria affects between 1 in 4 million (estimated actual) and 1 in 8 million (reported) children, with a total reported incidence of just over 100 in the century since it's been identified. There are currently between 30 and 40 known cases worldwide of Progeria. Children from all races and cultures around the world have been affected. Physical features of Progeria children include dwarfism, wrinkled/aged-looking skin, baldness, and a pinched nose. Mental growth is equivalent to other children of the same age. Most children with Progeria don't live beyond their early teenage years, though one or two have lived to their early 20s. ... more about Progeria and this site Latest News and Updates Fri, 19 Mar 2004

18. Progeria News Feed [HGPS.net] Home News Feed. progeria News Feed. Below are current news stories mentioningprogeria. Valid CSS Copyright ©19962004, Ryan A. MacMichael. http://www.hgps.net/feed/

@import "/hgps.css"; Home Progeria News Feed Below are current news stories mentioning Progeria. Home About News Feed ... Contact

19. ORPHANET® : Progeria Fiche dinformation pratiques sur  la progeria de HutchinsonGilford, signes de la maladie, autres sites internet et types de consultations. http://www.orpha.net/static/FR/progeria.html

Accès à la base de données Orphanet Progeria Accès direct aux détails Résumé La progeria de Hutchinson-Gilford est une affection caractérisée par un vieillissement prématuré de début postnatal. Les signes cliniques et radiologiques principaux comprennent une alopécie, une peau fine, une hypoplasie des ongles, une absence de graisse sous cutanée, et une ostéolyse. L'intelligence est normale. Les patients décèdent précocement dans un contexte d'athérosclérose. La plupart des observations sont sporadiques, et l'élévation de l'âge paternel suggère la possibilité d'une nouvelle mutation dominante. Récemment, une mutation tronquante du gène LMNA qui code pour la laminine A, a été retrouvée chez la majorité des patients atteints de progeria. Il existe de nombreux syndromes progeroïdes représentant des diagnostics différentiels. *Auteurs : Drs L. Faivre et V. Cormier-Daire (mai 2003)*. Signes de la maladie CHEVEUX RARES/HYPOTRICHIE/ATRICHIE CLAVICULE ANOMALIE DENTS ERUPTION TARDIVE DIFFICULTE D'ELEVAGE DOIGTS PHALANGE DISTALE HYPOPLASIE EXOPHTALMIE FACE ETROITE HYDARTHROSE/ARTHROSE LUXATION DE HANCHE MAIGREUR (AUTRE QUE LIPODYSTROPHIE) ONGLES FINS / HYPOPLASIQUES (PIEDS) ONGLES FINS/HYPOPLASIQUES (MAINS) PEAU FINE PEAU GLABRE / ABSENCE DE POILS PETITE TAILLE / NANISME RAIDEUR ARTICULAIRE RETARD PUBERTAIRE/HYPOGONADISME RETROGNATHISME/MICROGNATHISME SENILITE PRECOCE/VIEILLISSEMENT PREMAT.

20. Redirect http://www.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?176670

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