Patient organizations

Canadian Association for Porphyria/Association Canadienne de Porphyrie

 
Activities
  • Information on diagnosis, treatment and management of the porphyrias
  • Help with referrals and access to testing
  • Gatherings and presentations for people living with porphyria
  • Advocate for access to treatments in Canada

Porphyria Association Denmark

www.porfyriforeningen.dk
 
Address

Porfyriforeningen.dk
c/o Nina Svanborg
Baekmarksbrovej 94
DK7650 Boevlingbjerg
Denmark

Activities
  • Collect and mediate knowledge af porphyrias
  • Support research
  • Support and give advise to porphyria patients and their relatives
  • Create a network for people with porphyria / porphyria genes
  • The association is keen to learn news about porphyria, and may have contact to porphyria associations in other countries.

Association Française des Malades Atteints de Porphyries (A.F.M.A.P)

www.porphyries-patients.org
 
Address

Activities
AFMAP provides assistance and support to all porphyria patients and relatives : It aims at improving the quality of life and access to cure. AFMAP claims a strong advocacy role and defence of patients rights. Our organization is 100% volunteer.

Vereniging voor patiënten met EPP

www.porphyries-patients.org

Address

Aak 3
7833 DV
Nieuw-Amsterdam

Tel: +31631927998

Asociación Española de Porfiria

 
Address

Activities

  • Inform, support and provide guidance to patients suffering from any form of porphyria and their families.
  • Promote all ways facilitating contact and communication between porphyria patients.
  • Spread knowledge about these deseases in all their complex reality.
  • Promote, support and participate in initiatives and activities for a best sanitary, social and educational care, and for the life quality of the patients.
  • Initiate and support studies and therapeutic, genetical and clinical investigation on these deseases.
  • Create a better sensibilisation of the public and in the administrations, offices and organizations to get the entire integration of the patients.
  • Stand up for the patients and their families.
  • Spread the activities of the Association.

The Swedish porphyria association (RMP)

www.porfyri.se

Address

Activities
The Swedish porphyria association (RMP) was founded in 1976 and has around 500 members from the whole country. RMP accepts members with all different porphyria diagnoses as well as family members, professionals and other interested persons.
The main purpose of RMP is to support porphyria patients in their contact with school, work and healthcare and to support research projects within the area of porphyria diseases.
RMP arranges member meetings in different parts of the country and has information on leaflets and on the website. RMP is a member of Rare Diseases Sweden and collaborates with other porphyria patient organisations through their umbrella organisations.

Swiss Society for Porphyria

www.porphyria.ch

Address
Stadtspital Triemli Zürich
Institut für Labormedizin
Birmensdorferstrasse 497
8063 Zürich
Switzerland


Contact
President Rocco Falchetto, PhD
praesident@porphyria.ch

Contact 2
Treasurer Mehmet Aksözen, PhD
kassier@porphyria.ch

Activities
  1. To promote and safeguard the interests of porphyria patients
  2. To network porphyria patients and individuals who are affected by porphyria or have a general interest in porphyria
  3. To exchange information between members
  4. To promote porphyria awareness
  5. To safeguard the recognition of patient concerns by the public, political stakeholders and society
  6. To promote active patient participation in the healthcare system
  7. To ensure equality in access to healthcare and in reimbursement of therapy costs
  8. To promote scientific and medical education as well as medical support
  9. To foster networks with domestic, international and umbrella patient organizations
    The objectives above translate in activities such as:
    1. Two annual meetings
    2. Trilingual Homepage
    3. Media campaigns
    4. Contributions to national and international healthcare conferences and podium discussions, especially to raise awareness about medicine access challenges
    5. Science Slam appearances to raise awareness on porphyrias
    6. Porphyria flyer for physicians
    7. Porphyria emergency card for patients
    8. Database of Swiss drugs for physicians and patients
    9. Active participation in regulatory and HTA processes nationally and internationally
    10. Contributions to changing healthcare legislation related to orphan drug access
    11. Reimbursement of medicines supported by a dedicated legal counsel

The British Porphyria Association

 
Address
136 Devonshire Road
Durham City
DH1 2BL


Contact
Chairman John Chamberlayne
helpline@porphyria.org.uk
0300 30 200 30

American Porphyria Foundation

porphyriafoundation.org

Address
3475 Valley Rd NW
Atlanta, GA 30305


Email: general@porphyriafoundation.org
Tel: 301-347-7166 or 866-APF-3635 toll free

United Porphyrias Association

www.porphyria.org 

Address
6701 Democracy Boulevard
Suite 300
Bethesda, MD 20817
 
Email: info@porphyria.org
Tel: 800-868-1292


Contact
President Kristen Wheeden
kristen@porphyria.org
240-425-5948

Global Porphyria Advocacy Coalition (GPAC)

 


Contact 1
President Sue Burrell
president@gpac-porphyria.org
+44 7929 160664

Contact 2
Vice-president Sean Hegarty

Activities
GPAC officially became registered as a Charitable Incorporated Organisation (CIO) with the Charities Commission in May 2020.
GPAC is an umbrella organisation that provides a unified, collaborative voice for porphyria patients worldwide.
It connects, supports and engages national porphyria patient advocacy organisations, through the provision of an integrated international network, in an effort to gain awareness, access to diagnosis, management and treatment of the porphyrias.
GPAC, inclusively and equally, supports all of the porphyrias, promotes knowledge sharing among groups, and is transparent in its working practices. This approach supports patients/caregivers, physicians, researchers and regulatory bodies and ultimately, safeguards the interests of all individuals impacted by the porphyrias.
By November 2020, GPAC has over 23 Member countries and aims to provide a strong unified voice by working collaboratively with and to complement the existing national patient group’s actions.