National Patient Registry (2017-08-27)
|Press Release| World Hemophilia Day-2015 [PHPWS-NMO] (2015-04-17)
WORLD HEMOPHILIA DAY 2015::: Building a Family of Support on April 17, World Hemophilia Day PAKISTAN HEMOPHILIA PATIENTS WELFARE SOCIETY [PHPWS] PRESS RELEASE| Islamabad, Pakistan – 17 April 2015: Every year on April 17, World Hemophilia Day is observed around the world to increase awareness of hemophilia and other inherited bleeding disorders. This is a critical effort with an ultimate goal of ensuring better diagnosis and access to care for the millions who have a rare bleeding disorder yet remain without treatment. A significant amount of care, support, and advocacy is done through extended families which come in many forms: medical teams, friends, and colleagues, as well as immediate relatives. These communities share the ability to come together in large numbers and help improve people’s lives. World Hemophilia Day provides an opportunity to talk to your extended family and friends, colleagues, and caregivers to raise awareness and increase support for those living with an inherited bleeding disorder. “We are all working together in the fight to raise awareness and improve care.” said Hassan Raza, President-NMO, PHPWS For World Hemophilia Day 2015, PHPWS through its provincial Chapters will be organizing multiple awareness raising events in various cities across the country. In Pakistan, there are approx. 2600 people diagnosed with hemophilia. These are less than 10% of the total estimated numbers of hemophiliacs who have hemophilia in Pakistan. “We all work together, support one another, and help out when someone needs it. That is what family does for one another.” Says Masood Fareed Malik, Community Activisit, PHPWS “Join the PHPWS family and be a part of our effort to improve the diagnosis and standards of treatment for those who need it.” About hemophilia and other bleeding disorders: Hemophilia, von Willebrand disease, inherited platelet disorders, and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly. People with bleeding disorders do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or else it does not work properly. The severity of a person’s bleeding disorder usually depends on the amount of clotting factor that is missing or not functioning. People with hemophilia can experience uncontrolled bleeding that can result from a seemingly minor injury. Bleeding into joints and muscles causes severe pain and disability while bleeding into major organs, such as the brain, can cause death. About the Pakistan Hemophilia Patients Welfare Society: For two decades, the Pakistan Hemophilia Patients Welfare Society® [PHPWS], a national level not-for-profit organization, has worked to improve the lives of people with hemophilia and other inherited bleeding disorders in Pakistan. Established in 1995, it is a network of patient organizations serving in different parts of the country and has official recognition from the World Federation of Hemophilia [WFH] as National Member Organization [NMO]. Join us on Facebook: Pakistan Hemophilia Patients Welfare Society-NMO. Contact: PHPWS | firstname.lastname@example.org | www.hemophilia.org.pk |
WORLD HEMOPHILIA DAY-2015 [PHPWS-NMO] (2015-04-17)
World Hemophilia Day was observed with more enthusiasm and eagerness as compared to the previous years. It is celebrated to create awareness amongst society regarding Hemophilia and other Inherited Bleeding Disorders. This year, the event focused to encourage and motivate the bleeding disorder community on the theme of: "Get active for haemophilia: Picture the future" Pakistan Hemophilia Patients Welfare Society® [PHPWS] organized a national level celebration of World Hemophilia Day-2015 at Islamabad. The large number of patients in Pakistan on this World Hemophilia Day-2015 were taken to hiking camp on Margalla Hills in support of this year’s theme as it involves teamwork. On the hiking trail, several flag points were established where the patients were given different briefings/informative sessions with regards to their disease. This is a critical effort with an ultimate goal of ensuring better diagnosis and access to care for the millions who have a rare bleeding disorder yet remain without treatment.
Awareness Seminar on Patient’s Outreach - Lahore (2015-02-07)
Pakistan Hemophilia Patient’s Welfare Society® [PHPWS - NMO] has been serving the Hemophilia Community since last decade, and has been infusing all the necessary exertions to reach out, to all the patients in the country. But there is still a large gap between the number of Estimated and Registered Patients. Hence in order to address this issue of gap, this activity was premeditated, and is one of the series of the undertakings which will be apprehended to resolve this issue of gap, sanctioning us to reach out to all the Patients of Hemophilia and Other Inherited Bleeding Disorders with reference to a developing country. This was an initiative to advocate/sensitize the future Doctors and Nurses, ultimately providing them an insight with regards to Hemophilia and Other Inherited Bleeding Disorders in all the facets, with the support from NNHF – Novo Nordisk Hemophilia Foundation under the approved Project.
Patient Camp - Lahore (2015-01-01)
Pakistan Hemophilia Patients Welfare Society® has been serving the Hemophilia Community, for last one decade. It has been effectively able to provide extensive support towards Hemophilia Care, and has engaged itself in executing all the important activities to lobby effectually for the rights of its beneficiaries. But still these efforts attested to be not as much, since the patients were still facing a lot of other issue, such as Pre & Post Bleed Complications. Hence, it was identified that the Patients were not categorically aware regarding the concerns with reference to a Bleeding Episode. In order to address, this issue of awareness amongst the Hemophilia Patients and their Families a strong Project proposal was submitted to NNHF for the funding, which embodied all the elements with regards to Creating Awareness not only amongst Patients and their Families but also to the Society. Patient Camp refers to one of the activities, which pledges itself under the NNHF project, highlighting the prudent notion by the leadership, in order to overcome all the issues faced by the bleeding disorder community, with reference to a developing country.
Youth Training Session (2018-12-28)
YOUTH TRAINING SESSION
HEMOPHILIA PATIENT’S WELFARE SOCIETY, RAWALPINDI.
DECEMBER 28th, 2018
MR. MASOOD FAREED MALIK (PRESIDENT HEMOPHILIA FOUNDATION PAKISTAN)
DR. MUNAWWAR SHER KHAN (PRESIDENT HPWS RAWALPINDI)
ABIRA MAHEEN (PRESIDENT YOUTH GROUP)
1.Recitation of Holy Quran
The session started formally with recitation of Holy Quran that was done by youth group member Mr. Ali Raza.
For opening remarks Dr. Tahira Zafar from hemophilia patient’s welfare society Rawalpindi formally thanked Mr Masood Fareed for taking out time from his busy schedule and for conducting this capacity building session of youth. She expressed her views and hopes regarding the youth as future leaders who will play their role in hemophilia community.
3. Setting Ground Rules
The opening remarks were followed by setting ground rules for the session that were mutually decided by the participants and the facilitator.
4. Round of Introduction
An ice breaking session of introduction was conducted by Ms. Abira Maheen in which all the members participated and realized their strengths and weaknesses and how they can work on their strengths and overcome their weaknesses.
5. Community Engagement and Empowerment
This session was conducted by Mr. Masood Fareed Malik who paid special emphasis on following;
Time for oneself
Personality development and grooming
Exposure and Learning opportunities
Power of human mind
Importance of having a clear vision and setting goals and targets along with timeline for making that vision a reality
Motivational talk to encourage youth for their active participation in welfare of hemophilia community
6.Team Building Exercise
This session was facilitated by Ms. Abira Maheen. Participants were divided into two teams and they were given two different topics i-e Planning for hemophilia day and fund raising. They were given time period of 20 minutes to plan and organize according to their topics and give a presentation. The participants actively participated and at the end of the session they were judged by Dr Munawwar Sher Khan, Dr. Tahira Zafar and Mr. Hassan Raza. Mr. Masood Fareed Malik gave his remarks regarding both presentations and told them how they can improve themselves further.
7.Youth Group Role in Hemophilia Society’s Success
This was a formal presentation by Mr. Masood Fareed Malik in which he shared with the members; the criteria, structure and vison of national youth group and how that can help in local youth group’s activities. He also stated the importance of role of youth in welfare of hemophilia of community.
8. Closing Remarks
Dr Munawwar Sher khan ended the session with closing remarks. She showed her gratitude towards Mr. Masood Fareed for conducting this session and she also showed her hopes regarding youth group as future leaders and volunteers who will play their role in not only spreading awareness regarding the hemophilia and other bleeding disorders but also to play their role for the welfare of this bleeding disorder community and the community as a whole.
Written By: Ms. Abira Maheen