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Pulmonary hypertension (PH) is a severe lung and heart condition, which can affect people of all ages, including children and some forms are rare, progressive and deadly, e.g. pulmonary arterial hypertension (PAH). According to statistics the survival time without treatment is 2.5 years. Today we are having about 15 life prolongating treatments and only one of them is approved for children.

Children are not small adults! You cannot take any adult approved treatment and just cut into half.

PHKIDSGLOBAL´s mission is that more life prolongating treatments will be available for children at affordable costs and to promote research in this field.

For PHKIDSGLOBAL it is also vital to ensure that PH children have at least a kid’s appropriate childhood.

The worst scenario for parents is to be forced to helpless watch their children die.  Psycho- social and financial support is vital for their critical life situation.

PHKIDSGLOBAL’s mission is to ensure that all PH patients have as early as possible a diagnosis, that they have access to affordable drugs/surgery and to improve their quality of life. Our main activities are global awareness raising campaigns, advocacy actions, capacity building programs for new PH associations and the provision of information about the disease.

Despite progress in the field of awareness, it can still take anything up to three years and three doctors to achieve a correct diagnosis of pulmonary hypertension. With better awareness and education, we hope in time to be able to move things in this respect.

Thanks to innovative treatments great progress has been made in this field, with improved survival and better quality of life for patients, but delays in diagnosis and access to treatment/surgery represent major challenges in many countries.

PHKIDSGLOBAL also targets those countries worldwide, where there are no patient associations for children with Pulmonary Hypertension.

The start-up program helps new associations get started with an updated educational website and a strong SEO, a patient and care giver information brochure, education how to organize a patient meeting, educational information how to do press releases and tailor-made advocacy letters for health authorities in their countries to assure access to treatment.

PHKIDSGLOBAL believes that patient associations are uniquely placed to understand, as well as advocate the many unmet needs of patients, especially of PH children. Currently, PH patient associations do not exist in all countries; in addition, many existing associations were formed recently and lack experience. Our aim is to help put in place a strong World PH community consisting of empowered national patient associations. The PH patient number per million in countries with no patient association is significant lower than in countries with strong patient associations. Affordable access to treatment is very often missing in those countries. According to a recent study, patients who are active in a Patient Association have a much better QOL and prognosis.

The PHKIDSGLOBAL website contains information about PH, specialist centers and experts (with the aid of a geo-locator) and other disease-related issues.  PHKIDSGLOBAL will continue to optimize online media reach by posting updates of activities, launching media campaigns, videos etc. and will monitor results with analytics programs in order to ensure maximum exposure.

 

PHKIDSGLOBAL is planning a fundraising campaign, based on this video showing the isolation of children with PH, also called O2Kids or Blue Lips Kids : 

 

World PH Day is a PH awareness raising initiative targeting at the general public to achieve an earlier diagnose and it also targets with its key messages the national health authorities and relevant stakeholders to assure access to treatment for every patient.

PHKIDSGLOBAL wants to provide funding for new patient associations to create a WPHD event in their own country to increase the awareness of Pulmonary Hypertension. PHKIDSGLOBAL will coordinate, provide artwork and materials as well as support the associations with any help they need to set up a strong awareness initiative in their country, with a professional press release.

 

Our main objective is to change the history of this severe disease and to support families facing this challenge in every possible way.

 

Children with PH cannot:

  • Play, Run and Dance

because they become breathless immediately

  • Ride a bike, roller skate or ski

because they are on anticoagulants

and a fall can lead to hemorrhages

  • Go to kindergarten, school or parties

because they could catch a cold and this could be fatal

  • Bath or Swim because most of them are on an intravenous therapy
  • PH is rare and incurable
  • PH affects heart and lungs
  • PH is difficult to diagnose
  • PH can occur at any age
  • children with PH have the worst prognosis

 

Simple things like a special adapted electric scooter or a very light and small oxygen concentrator can make their life so much easier!

PH Kids Logo

Gerald Fischer

Born 14 May 1959

Lives in Vienna, Austria

Education and professional experience

Baccalauréat at the Lycée Français de Vienne and University studies in World Trade. Country manager in Tunisia, Egypt, India, Greece and Kenya for the largest European tour operator. In 1987 launched his own travel agency chain and took over the family business, Fischer Spirits in the 5th generation.

Patient advocacy training

Course at the London School of Economics and Political Science on Health Technology Assessment in Health Care Decision Making in 2010.

Management at PHA Europe

Founding member in 2002, President and CEO from 2009 till end of 2015. Fundraising manager and office manager in the headquarters of the association in Vienna since 2016. Numeros speaking engagements over the past years.

Other positions

After his daughter was diagnosed with pulmonary hypertension in 1998, Gerry founded a research association in Vienna, which led later to the setting up of the PH Ludwig Boltzmann Institute (LBI) in Graz.

Since 2002 he is President and CEO of the Austrian pulmonary hypertension patient association, which has 320 patients as active members (with a total population of 8 million in Austria, this equals 40 patients per million).

Gerry is Member of the Council of the Ministry of Health in Austria, representing patients with a rare disease, since 2012.

In 2014 he received the Golden Medal of Honor for special achievements for the Republic of Austria from the Austrian President.

Gerry has also received the Austrian titles “Counselor of the Chancellor” and “Senator of the Chamber of Commerce” (2008 and 2005 respectively)

In 2015 Gerry was nominated “Periwinkle Pioneer” by PHA, the USA pulmonary hypertension patient association. This honor recognizes those who have played a unique and distinctive role in changing the history of pulmonary hypertension.

PH fundraising and awareness raising experience

PH Milestones in the Vienna Prater. With a donation of € 29.- one can create a cobblestone with a name and/or message. More than 16.000 stones are already laid on the square in front of the Planetarium.

Very unique concerts, bringing together the Vienna Symphonic Orchestra with Rock & Roll stars, opera singers with Rock stars. More than 15.000 spectators per concert.

Blue Lips & Celebrities. Engaging the most well known Paparazzi’s to take photos of celebrities holding a lip shaped blue lollipop in front of their lips and allowing PHA Austria use of the photos. More than 100 celebrities from Austria & Germany have taken part.

PHA Austria part of ‘Energy for Life’ from Gazprom in a yearly classical concert of highly talented children with a very famous conductor.

Selling tickets for the world famous Vienna Philharmonics, for their rehearsal of their New Year’s concert.

Projecting a Christmas calendar on the windows of the Vienna Majors Town Hall with sponsor mentioning.

Vintage Tram with Christmas bakeries and celebrities circling the Vienna City Center

Circus Roncalli offered PHA Austria their last show of the season, the Sunday Matinee, we added Austrian artists to their crew and turned the last show into a celebrity event.

Yearly Gala Dinner with three worlds famous 3-star cooks and one celebrity show act. More than 250 VIP´s are attending the Gala.

Vernissage in the Vienna Zoo, where the Orangutan Lady likes to paint. We auctioned paintings from singers, actors, writers, politicians, celebrities and real famous painters.

Bicycle events like ‘Mission Million’ from Vienna to Amsterdam. We are having our own team with professional bicycle racers.

Creating a community of runners called ‘I run for you’ which led to the Vienna Zoo Run, where you can run 6 K (equals the 6 minutes walking tests) through 5 continents, pepped by wild animals. This happens on the longest day of the year. For Halloween, we created the first costume Ghost run, where we try to escape the Grim Reaper, like our patients during the whole year.

Languages

German native speaker, fluent in English and French.



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