Patient organisation round up: August 2019
This month, patient organisations have completed fundraising activities, held meetings to promote the importance of different conditions, and planned future awareness events.
Image: AT supporters Andy, John and David completed a cycle ride from Lands End to John O’Groats in July to raise funds for the Aspergillosis Trust (AT).
Aspergillosis Trust (AT) gets involved with fundraising activities
AT supporters Andy, John and David completed a cycle ride from Lands End to John O’Groats in July. This fundraising challenge was completed to raise funds for the Aspergillosis Trust (AT) and the Balerno High School Tanzania project. They exceeded their target of £5,000 for each charity. Andy’s wife, Jo, suffers from aspergillosis, which is why Andy took on this challenge to raise awareness of this severe, debilitating lung condition. Read Jo’s story.
Another AT supporter, Yvonne Gibson, is taking on a skydive on 18 August to raise funds for AT and Brain Tumour Research in memory of her husband.
Pulmonary Fibrosis Foundation (PFF) promotes Pulmonary Fibrosis Awareness month
The Pulmonary Fibrosis Foundation (PFF) is inviting everyone to participate in Pulmonary Fibrosis Awareness month this September. This annual campaign welcomes the international pulmonary fibrosis community to use the hashtag #BlueUp4PF and share facts, stories and photos, as well as participate in a 24-hour giving challenge on 30 September.
Fondazione Ricerca Fibrosi Cistica (FFC) set to launch 27 new research projects
27 new advanced research projects in cystic fibrosis have been selected this month for funding by the Scientific Board of the Italian Cystic Fibrosis Research Foundation (FFC). The board relied on the collaboration of more than 80 independent international experts to make the selection. As of September, all of these projects will be made available for ‘adoption’ by FFC supporters, and research will begin.
June Hancock Mesothelioma Research Fund holds Action Mesothelioma Day
The June Hancock Mesothelioma Research Fund held its 14th annual Action Mesothelioma Day event in Leeds on 5 July. This event was an opportunity for patients, families and friends to meet mesothelioma researchers in an informal setting and talk with them about the latest research developments. It was an amazing day and comments from attendees included: “an excellent day – fantastic group of professionals” and “love the collaboration between researchers – exciting times ahead”.
Pulmonary Hypertension Association (PHA UK) investigates financial and emotional impact of PH
The Pulmonary Hypertension Association (PHA UK) has conducted research into the financial and emotional impact of pulmonary hypertension (PH), and will be sharing the results in August and November.
PHA UK has also launched a new website, www.phocusonlifestyle.org, and is working on an app to help people live well with PH.
Fundación Respiralia holds 20th Swimming Tour to fight cystic fibrosis
The Respiralia Foundation held its 20th swimming tour around the island of Formentera to raise awareness and funds for cystic fibrosis research and support. 240 participants took part, facing an unexpected challenge when they hit a swarm of jellyfish on the first day. The event finished with a demonstration of the impact that participants’ and volunteers’ involvement has had on the fight against cystic fibrosis, and a private concert by the well-known artist Jah Chango.
Federación Nacional de Asociaciones de Enfermedades Respiratorias (FENAER) holds second annual Congress
The Spanish Federation of Respiratory Patients (FENAER) held their second annual congress and, for the first time, made their sessions available to watch online. One presentation was given by Professor Jacob. I. Sznajder, a pneumology expert, who is dedicated to research and assistance in the field of lung diseases.
Pulmonary Hypertention - Ukrainian Rare Disease Association (PHURDA) holds meeting on rare and orphan diseases
PHURDA held a meeting with doctors, nutritionists and representatives of rare and orphan diseases, including pulmonary hypertension, tuberous sclerosis and myopathy Duchenne.They discussed each of these conditions, concluding that common problems faced by patients are: lack of early diagnosis, lack of qualified specialists, absence of a state patient register, lack or poor availability of medical treatment, lack of comprehensive rehabilitation programmes and psychological support for patients and their families. They also discussed the aims they had to improve the situation in 5 years’ time.
Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSC) meets with rare diseases parliamentary investigation commission
PAHSSC is one of the founding organisations of the Rare Diseases Network of Turkey, which was invited to the rare diseases parliamentary investigation commission. PAHSSC presented on the range of problems experienced by people with rare diseases and potential solutions.
Scleroderma Awareness activities have also been carried out in Bodrum, Ankara. A patient meeting was held in İstanbul, and the second idiopathic pulmonary fibrosis (IPF) patients and families’ educational course was held in Izmir at the Ege University’s Interstitial Lung Diseases Division with Prof. Dr. Nesrin Mogulkoc.
Merseyside Asbestos Victim Support Group (MAVS) hold annual event for Action Mesothelioma Day
The Merseyside Asbestos Victim Support Group held their annual event to commemorate Action Mesothelioma Day on 5 July. At 12:00 they released a Dove in honour of all those fighting Mesothelioma and in remembrance of those who have died from this condition. There was also an opportunity to meet clinical experts on a one-to-one basis and ask questions. Two patients shared their experiences, and a nurse from Mesothelioma UK launched a new project.
Associazione Malati in Ossigeno-ventiloterapia e Riabilitazione (AMOR O2) holds 3-week alpine retreat
Members of the AMOR O2 association took part in a 3-week retreat in the Italian alps. The retreat included a range of activities, such as breathing exercises, walking and group games. Participants also took part in educational activities. A physiotherapist explained how the respiratory system works, factors that can lead to its malfunction and what to do to improve respiratory efficiency. A nurse talked about how to recognise an aggravation or relapse of respiratory disease and what to do when this happens. Finally, a psychologist gave a talk on living well with a lung condition.
Rare Diseases Europe (EURORDIS) launch activities for the ‘ProGeneRare’ project
EURORDIS have recently held activities as part of the project ‘ProGeneRare’, to improve the quality of medical services in Romania in the genetic and rare diseases area.
During the last week of June and the first week of July, NoRo Center for Rare Diseases in Zalau, Romania hosted the training course for healthcare professionals from the North-West Region on rare disease. The main topics included: medical genetics, screening and prenatal diagnosis in rare diseases, birth defects, and diagnostic and laboratory medicine.
For more information, visit the ProGeneRare website
Alpha-1 Foundation Ireland supporters complete rally to raise awareness
Congratulations to Carine and Niall Maher who successfully completed the RETRO Cannonball Rally in South-West Ireland on July 12-13. On their scenic but adrenaline-packed "Drive 4 Alpha-1" they raced from Kinsale to Bunratty to raise awareness of Alpha-1.
Alpha-1 Sweden organise Nordic meeting
Alpha-1 Sweden have organised a Nordic Alpha-1 meeting, which will take place in August. At this meeting, attendees from Sweden, Norway and Denmark will meet and work together to discuss access to medication.