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PNH Support Assosiation Australia » Australians with Paroxysmal Nocturnal Haemoglobinuria (PNH)

Meet the PNH Community. Welcome to the PNH Support Association of Australia. Welcome to the PNH Support Association of Australia, the only organisation dedicated to Australians with Paroxysmal Nocturnal Haemoglobinuria (PNH). Newsletter issue 6 – May 2016. Newsletter issue 5 – March 2015. Newsletter issue 4 – March 2014. Notice of next PNHSAA National Members Meeting 2014. Notice of next Annual General Meeting August 2013. Newsletter issue 3 – July 2013. Support for New Zealand PNH patients July 2013.

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PNH Support Assosiation Australia » Australians with Paroxysmal Nocturnal Haemoglobinuria (PNH) | pnhsaa.org.au Reviews
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Meet the PNH Community. Welcome to the PNH Support Association of Australia. Welcome to the PNH Support Association of Australia, the only organisation dedicated to Australians with Paroxysmal Nocturnal Haemoglobinuria (PNH). Newsletter issue 6 – May 2016. Newsletter issue 5 – March 2015. Newsletter issue 4 – March 2014. Notice of next PNHSAA National Members Meeting 2014. Notice of next Annual General Meeting August 2013. Newsletter issue 3 – July 2013. Support for New Zealand PNH patients July 2013.
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2 about pnhsaa
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6 events
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PNH Support Assosiation Australia » Australians with Paroxysmal Nocturnal Haemoglobinuria (PNH) | pnhsaa.org.au Reviews

https://pnhsaa.org.au

Meet the PNH Community. Welcome to the PNH Support Association of Australia. Welcome to the PNH Support Association of Australia, the only organisation dedicated to Australians with Paroxysmal Nocturnal Haemoglobinuria (PNH). Newsletter issue 6 – May 2016. Newsletter issue 5 – March 2015. Newsletter issue 4 – March 2014. Notice of next PNHSAA National Members Meeting 2014. Notice of next Annual General Meeting August 2013. Newsletter issue 3 – July 2013. Support for New Zealand PNH patients July 2013.

INTERNAL PAGES

pnhsaa.org.au pnhsaa.org.au
1

Treatment » pnhsaa

http://pnhsaa.org.au/treatment

Meet the PNH Community. There are several treatment options availableto people living with PNH, depending on the progress and severity of the disease. The only cure for PNH is a bone marrow transplant; other treatments are supportive only but have significant benefits including a reduction in the severity of symptoms. Curative Treatment – PNH. Supportive Treatment – PNH. Monoclonal Antibody for PNH – Eculizumab (Soliris). Newsletter issue 6 – May 2016. Newsletter issue 5 – March 2015.

2

Australian Capital Territory » pnhsaa

http://pnhsaa.org.au/australian-capital-territory

Meet the PNH Community. Meet the PNH community – Australian Capital Territory. As of yet, there are no stories to share from people affected by PNH in Australian Capital Territory. If you would like to share your own PNH experiences on our site, please contact our Secretary, Jenny Sturrock on info@pnhsaa.org.au. Newsletter issue 6 – May 2016. Newsletter issue 5 – March 2015. Newsletter issue 4 – March 2014. Notice of next PNHSAA National Members Meeting 2014. Newsletter issue 3 – July 2013.

3

Bone Marrow Transplant » pnhsaa

http://pnhsaa.org.au/bone-marrow-transplant

Meet the PNH Community. A bone marrow transplant (BMT) is the only cure for PNH, however it involves significant risk and it is often difficult for a patient to obtain a well-matched donor. A BMT is considered a “last resort” for a PNH patient and is usually only performed where a patient has an excellent match (twins and siblings are best) or their PNH is immediately life-threatening and/or not responding to other treatments. Disclaimer: This information has been prepared by members of the PNHSAA Inc an...

4

South Australia » pnhsaa

http://pnhsaa.org.au/south-australia

Meet the PNH Community. Meet the PNH community – South Australia. As of yet, there are no stories to share from people affected by PNH in South Australia. If you would like to share your own PNH experiences on our site, please contact our Secretary, Jenny Sturrock on info@pnhsaa.org.au. Newsletter issue 6 – May 2016. Newsletter issue 5 – March 2015. Newsletter issue 4 – March 2014. Notice of next PNHSAA National Members Meeting 2014. Notice of next Annual General Meeting August 2013.

5

Patient Resources » pnhsaa

http://pnhsaa.org.au/patient-resources

Meet the PNH Community. PNH – Documentary. Produced, written and voiced by Danielle Robertson. Useful brochures to download:. Information for General Practitioners managing patients with PNH. Become a member of the PNH Support Association. Medical Journal paper that explains a case study of an Italian PNH patient who underwent a splenectomy. Even though PNH is rare you are part of a larger network of Australians who are also living with a rare disease. Here are some of their stories. Http:/ www.marro...

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pnhsanz.org.nz pnhsanz.org.nz

Patient Resources - PNH Support Association of NZ

http://www.pnhsanz.org.nz/patient-resources.html

The Evidence for Soliris. Please speak to a medical specialist to clarify any health-related information available on this website. Understanding Paroxysmal Nocturnal Haemoglobinuria (PNH), Alexion Pharmaceuticals Australasia (2011). Paroxysmal Nocturnal Haemoglobinuria Treatment and Management, Medscape (2011). The Role of Complement Inhibition in PNH, Peter Tillman, (2008). How I treat Paroxysmal Nocturnal Haemoglobinuria, Robert Brodsky (2009). Http:/ www.nzord.org.nz. Http:/ www.pnhdisease.org.

alexionpharma.com.au alexionpharma.com.au

Resources and Support for Patients with Ultra-rare Diseases

https://www.alexionpharma.com.au/Patients/resources-and-groups

Patient Groups and Resources. Why Choose Alexion Australia. Raquo; Patient Groups and Resources. Patient Groups and Resources. Alexion shares key goals with patient organisations worldwide, including increasing the understanding of rare and ultra-rare diseases, improving patient care, and enhancing patient access to innovative therapies. Our approach to serving patients is driven by a passion for understanding and meeting the unique needs of patients and families suffering from rare diseases.

pesg.org pesg.org

İlgili Linkler - PESG

http://www.pesg.org/ilgili-linkler.php

PNH ile İlgili Toplantı ve Sempozyumlar. International PNH Interest Group. Http:/ www.pnhinterestgroup.org/. PNHSource Patients and Caregivers. Aplastic Anemia and MDS International Foundation. Http:/ www.aamds.org/. Canadian Association of PNH Patients. Http:/ www.pnhca.org/. Pnhsaa PNH Support Assosiation Australia. Http:/ www.pnhsaa.org.au/.

pnhinterestgroup.org pnhinterestgroup.org

Resources | International PNH Interest Group

http://www.pnhinterestgroup.org/resources

If you're having trouble logging in please try another browser i.e Firefox, Chrome. Health care professionals who are interested in more information about PNH may find the following organizations of interest:. American Nephrology Nurses’ Association. East Holly Avenue, Box 56. Pitman, NJ 08071-0056. Telephone: 1 856 256 2320. Website: http:/ www.annanurse.org. American Society of Hematology (ASH). 1900 M Street, NW. Washington, DC 20036. Tel: 1 202 776 0544. Website: http:/ www.hematology.org. If you are...

fundaper.org fundaper.org

Sitios de interés

http://fundaper.org/sitios-de-interés.html

Qué es una Enfermedad Rara. Hemoglobinuria Paroxística Nocturna (HPN). Síndrome Hemolítico Urémico Atípico (SHUa). Profesionales de la salud. 1500 asistentes entre pacientes y sus familias se reunieron para conmemorar el Día Mundial de las en. NORD; National organization for Rare Disordes. Http:/ www.rarediseases.org/. EURODIS; Rare Diseases of Europe. Http:/ www.eurordis.org/. Canadian Association of PNH patients;. Http:/ www.pnhca.org/. PNH support Association of Australia Inc. PNHSAA;.

pnhca.org pnhca.org

Useful Links « Canadian Association of PNH Patients / L’Association québécoise de l'HPN

http://www.pnhca.org/resources-links/useful-links

Disease & Treatment. Advocacy & Support. Be a Mentor, Request a Mentor. Resources & Links. List of Canadian PNH Doctors. INVITATION – Montreal Patient and Caregiver . INVITATION: AAMAC Patient Education Day in Moncton. SAVE THE DATE: Montreal Patient and Caregiver Meet. INVITATION: AAMAC Patient Support Group Meeting. 2016 AAMDSIF Patient and Family Conferences (US ci. PARTICIPATION REQUESTED: PNH Patient Survey. NEW STUDY: Eculizumab in Pregnant Patients with PN. PNH in the News. Carrie Richards –...

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pnhsaa.org.au pnhsaa.org.au

PNH Support Assosiation Australia » Australians with Paroxysmal Nocturnal Haemoglobinuria (PNH)

Meet the PNH Community. Welcome to the PNH Support Association of Australia. Welcome to the PNH Support Association of Australia, the only organisation dedicated to Australians with Paroxysmal Nocturnal Haemoglobinuria (PNH). Newsletter issue 6 – May 2016. Newsletter issue 5 – March 2015. Newsletter issue 4 – March 2014. Notice of next PNHSAA National Members Meeting 2014. Notice of next Annual General Meeting August 2013. Newsletter issue 3 – July 2013. Support for New Zealand PNH patients July 2013.

pnhsanz.org.nz pnhsanz.org.nz

PNH Support Association of NZ - Home

The Evidence for Soliris. PNH is an ultra-rare blood disorder. We're here to support those affected by it. The PNH Support Association of New Zealand was established to support New Zealanders living with Paroxysmal Nocturnal Haemoglobinuria (PNH). We provide a network for patients to share experiences and knowledge. While we can't promise to make the disease burden any lighter, we hope to empower patients and families to manage the PNH condition as effectively and positively as is possible. Those who hav...

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